Michael Moynihan (Cork North West, Fianna Fail)
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The purpose of today's meeting is to have a discussion on a rights-based approach to day services. On behalf of the committee, I warmly welcome Dr. Alison Harnett, chief executive, and Ms Teresa Mallon, representative of the working group on the development of the outcomes-focused New Directions, National Federation of Voluntary Service Providers; Mr. Joe Meany, chief executive officer and Ms Suzanne Morrissey Forde, deputy chief executive officer and finance manager, Delta Centre; and Ms Mary Foyle, area service manager for day services, and Mr. Stephen Boyle and Ms Sarah Molloy, day service managers, Ability West.

All witnesses are reminded of the long-standing parliamentary practice that they should not comment on, criticise or make charges against a person or entity in such a way as to make him, her of it identifiable, or otherwise engage in speech that might be regarded as damaging the good name of the person or entity. Therefore, if witnesses' statements are potentially defamatory in nature in relation to identifying a person or entity, they will be directed to discontinue their remarks and it is imperative that they do so.

Members are also reminded of the self-same long-standing parliamentary practice. Any member joining the meeting remotely must be within the confines of the Leinster House complex.

I invite Dr. Harnett to make her opening remarks.

Dr. Alison Harnett:

I thank the committee for this opportunity to meet with it to discuss a rights-based approach in disability day services. The national federation is an umbrella body of not-for-profit organisations providing direct supports and services to people with intellectual disability and autism in Ireland. Across 54 organisations, our members support approximately 26,000 children and adults with intellectual disabilities and autism and their families, providing services and support throughout their life span.

Approximately two thirds of disability services are provided on behalf of the State by the voluntary sector so we warmly welcome the joint committee's invitation to our organisation to discuss a rights-based approach to day services. Ms Teresa Mallon, who is here from Saint John of God Community Services, is the chair of our assisted decision making reference group. She is one of the federation's representatives on the range of day services group that has been set up by the HSE. We will speak on the broad themes set out in my opening statement, which has been circulated to members and I am very happy to speak in more detail during the discussion. For the sake of brevity my opening statement will be shorter than the document that has been submitted.

Since the publication in 2012 of New Directions, there have been significant developments in the provision of day service supports. Disability day services have seen a sustained investment programme for school leavers over the past decade, the development of interim standards in 2016 and the implementation of a wide range of imaginative initiatives to support people with disabilities in how they access day service supports. Preparation is under way for the introduction of outcome-focused monitoring for interim standards for New Directions and supports.

As we move forward this year there are key contextual factors, including recent developments in policy and legislation, the recruitment landscape, departmental change, the funding environment and HSE restructuring, which will all have an important influence on the delivery and future development of day services and for wider integrated services that respond to the person holistically. Most importantly, the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD, provides us with the framework and impetus to collectively ensure a rights-based approach to services and supports.

The movement of disability services to the Department of Children, Equality, Disability, Integration and Youth and the publication of the disability action plan are concrete examples of the Government's commitment to reimagining disability services. The national federation believes that we all have a shared responsibility, together with State agencies and Departments, to reflect on disability services, listen closely to the views of people with lived experience, and progressively work together to ensure continuously evolving, rights-based, high-quality supports for people with disabilities.

Together, the shared focus on implementing the UNCRPD, the shift to a will and preference approach to decision-making and the context of the HSE restructuring provide a unique opportunity to restructure the funding systems underpinning service provision and enable a responsive approach to meeting the will and preference of people supported by services. This will require the tackling of barriers within the system that prevent individuals from being able to exercise their full rights in decision-making. Examples are the need for a pathway to retire from day services for those who wish to do so, the need for the development of more flexible supports, including at evenings and weekends, and sufficient staffing to enable more individualised approaches. A number of very helpful initiatives are on the horizon.

The HSE has established a national day services multidisciplinary review group, including representatives from our organisation, and we welcome this collaborative approach to finding solutions to the limited availability of multidisciplinary supports for people receiving day services. A national roadmap would greatly enhance delivery of multidisciplinary supports. Workforce planning and a cross-government approach that includes our sector in planning to address these barriers, including recruitment and retention issues, would be very welcome.

The disability capacity review highlighted important demographic changes. For example, there are increasing numbers of autistic people accessing disability services, many of whom have great needs requiring significant supports in the context of intellectual disability services. The capacity review reports that more than 50% of children accessing disability day services are autistic in comparison with 5% of adults accessing day services. In 2023, for the first time, more than 50% of school leavers entering day services were autistic. This is a significant demographic shift and demonstrates the need for strategic changes in planning, modelling, delivering and resourcing to ensure the most suitable models of support are developed which can meet the needs of the people presenting.

Changing needs have a significant impact on the way in which people access rights-based services. The extent of changing needs as people with intellectual disabilities age is not yet fully quantified but it is extremely important to guide planning. Co-ordinated and centralised data collection would enable accurate forecasting, forward planning and appropriate resources to upholding the rights of older adults using day services.

Meeting the needs of aging adults with intellectual disabilities and autism requires a newly structured and funded model of support. The funding model changed in 2015 for school leavers accessing day services to respond more closely to needs. However, many people entered day services prior to 2015 and the funding was based on older block-funded models. Many of these people are now ageing and require additional supports but there is no equitable standard pathway to find the support to meet these changing needs.

Unfortunately, there are significant barriers to achieving rights for people with intellectual disabilities, including in a range of key areas such as employment, education and transport. We really need an ambitious plan to address the high rate of unemployment among people with intellectual disabilities. Day services can play a part in addressing this inequality through providing support to the person to access employment alongside mainstream supports but we need to be resourced to do so. A cross-departmental response is required to address structural barriers to employment, including the development of enhanced pathways to work and making sure earnings thresholds and criteria for disability payments do not prohibit people from seeking work.

The programme for access to higher education will see a three-year pilot begin in September 2024 and ten higher education courses have been funded under the programme. We warmly welcome this initiative and hope that it is leads to ongoing access to higher education for people with intellectual disabilities. Some people will require ongoing support from day services to facilitate their access and success in education settings.

Our members strongly support the view that transition planning for school leavers should begin as early as 12 to 13 years of age, supporting young people and families to prepare for and have access to information on further and higher education and employment options for people, in addition to day services. Planning should be informed by demographic data and supported by multi-annual and capital investment to ensure adequate provision of the day services supports that are tailored to the need of people who begin accessing supports as school leavers. Such supports include, for instance, responding to the need for quiet environments for young autistic people. There is a critical need to move away from the current practice of primarily responding in emergency and crisis situations. We need to develop an ambitious vision for our young people, starting as early as possible.

When day services closed during the pandemic, routines were disrupted as individuals received their support in residential settings or were supported in the family home instead of attending day services. Many of my colleagues will speak to this during the meeting. While many people were delighted to return to disability day services, there are many who have expressed their will and preference to have their service delivered differently. A collaborative process for gathering evidence regarding will and preference in day services would ensure that those who are approaching older age are afforded the right to retire from a day service, if that is the person’s preference, and to develop flexible options to support them.

The ambitious and exciting opportunities provided by the disability action plan will ensure that more people with intellectual disabilities and autism in Ireland can access their rights. However, it is important to note that disability services are currently experiencing significant challenges in terms of the sustainability of resourcing and staffing. These are challenging their stability and their capacity to respond to the pressing needs and rights of people we support.

Disability services experienced a decade of underfunding following the global financial crisis. This has been compounded in recent years by inflationary pressures, a recruitment and retention crisis, growing unmet need and a lack of funding for changing needs as people age. Service providers are experiencing a crisis in sustaining quality, rights-based supports. Appropriate and sustainable resourcing is required across all aspects of service provision to fulfil our joint obligations set out under the UNCRPD.

We welcome the support of the Minister, the Department of Children, Equality, Disability, Integration and Youth and the HSE in collaboratively seeking pathways to address the challenges set out here and to ensure that the rights enshrined in the UNCRPD are upheld and made real in people’s lives. We welcome the focus of the committee today in examining how this can be achieved with particular regard to day services , and we thank it for inviting us to be a part of this discussion.

Mr. Joe Meany:

I thank the committee. Delta Centre CLG is a registered charity and has a voluntary board of trustees that ensures the organisation operates in line with its statutory obligations. The organisation is a section 39 agency and is funded by the HSE. The service was established in 1990 by a group of concerned parents who were advocating for people with disabilities in the Carlow area. As the service grew it moved to its current location in Strawhall, County Carlow. Delta Centre currently supports 181 adults with moderate to profound intellectual disability, ASD, mild intellectual disability with associated syndrome and-or physical or sensory disability.

We provide a wide range of care and support services to adults with disabilities from various HSE areas, including CHOs 5, 7, 8 and 9. Our services include day, residential, supported living, and respite services. Delta Centre's entire service has a dedicated staff team of approximately 250 employees with varying skill sets, including social care workers, care assistants, nurses, behaviour therapists, administration, maintenance, catering and horticulture staff.

Delta Centre existing services consist of a regional respite service which receives referrals from five counties across the south east and is delivering scheduled respite breaks to approximately 66 individuals and their families annually since the service opened in June 2022, following a successful tender process run by the HSE. Since its opening the service has also highlighted the need for an expanded service requirement as there are approximately 62 individuals on a waiting list at present.

Delta Centre residential services include 12 HIQA-registered properties which provide a community living setting where residents are provided with care, support, dignity and respect within a caring environment that promotes the health and well-being of each individual resident. Support needs vary across the different residential properties. A total of 40 residents currently avail of residential supports. All residential properties adhere to HIQA regulations and endeavour to not only be compliant with regulatory standards, but also focus on quality improvements across the residential service and foster a rights-based approach to all aspects of care.

The service also supports three individuals from Delta Centre day services to live independently with nominal supports, and we hope to develop this supported living model in the future. Delta Centre day services offer day support services in line with the HSE national service New Directions policy to 137 individuals. The aim of the service is to provide individual outcome-focused supports to allow adults using this service to live a life of their choosing in accordance with their own wishes, needs and aspirations. The programmes are delivered to assist people make their own choices and plans and be active members of the community. The focus is person-centered and on active citizenship as well as high-quality service provision. The programmes offer opportunities to access local employment, local services and facilities and community life. A recently opened new community-based service location supports Delta Centre's commitment to community access for all individuals who avail of its day services.

What are the challenges to the delivery of a rights-based approach in day services? There are ten I have accounted for here and I will mention most of them. In terms of recruitment and retention, individuals accessing day services benefit hugely from consistent appropriately trained employees. The past 24 months have proved to be an extremely challenging time in the context of the recruitment and retention of staff. Not least of the numerous reasons for this is that people appear to be moving away from social care as a viable career option. The challenge is particularly ominous for section 39 agencies as we must compete with the HSE and section 38 agencies, which generally paying higher salaries. While the 2023 WRC agreement is the first step in the process, it will not resolve the issue and pay parity with HSE employees, including terms and conditions, must be implemented as a matter of urgency.

As regards transport to access day services, current transport supports available for individuals to access their day services are unclear and inconsistent and lack transparency and agreed access criteria across the country. This results in inequitable access to transport supports and is often dependent on where people live and how strongly they are prepared to advocate. To ensure equity of access to day services, transport services need to be funded and provided in an agreed sustainable method on a long-term basis.

On the issue of access to purpose-built designed day service locations, through the past 10 years or so the HSE has allocated lease rental and one-off fit-out funding to service providers to develop new day service locations. While this model has supported the development of locations, it is expensive, does not allow for increased costs of rental properties and often forces services into using less than appropriate accommodation because that is all that is available.

In regards to equal access for new entries to day services, there is an increasing population of individuals requiring access to day services who do not meet the criteria for school leaver funding. An agreed funding mechanism needs to be implemented to resource these individuals' access to appropriate day services. Many of these individuals have limited information regarding their diagnosis and require new assessments to be completed. Language and communication can also be a challenge in accessing services.

On the access to day services based on will and preference, there is an increasing cohort of individuals who do not wish to attend traditional services and want to avail of home-based services. The profile of individuals availing of day services increased during Covid. This is a major challenge for providers as they attempt to deliver a rights-based service in adherence to the will and preference of individuals within a funding structure that does not allow or account for same.

On the school leaver profiling process, the existing profiling process was originally developed in 2014-15 and has offered a standardised approach to school leaver resource allocation. However, it does not allow for the level of supports often required to meet the needs of school leavers, including additional supports required to deliver services. The current resource allocation model needs to be adjusted to account for the higher support needs of individuals who often require increased staffing support in a day service setting to fully participate in their person-centred planning process. The current profiling tool was to be an interim solution until the agreed national resource allocation model was in place. The model needs to be evaluated and updated to support the transition to a rights-based approach to resource day services.

With regard to equal access and supports to day services for individuals with ASD, the numbers of people with disabilities leaving school with a secondary diagnosis of ASD has been increasing year on year for the past ten years. In 2023, more than 50% of school leavers with disabilities also have a diagnosis of ASD. To ensure these students have access to a rights-based day service, the transition from school to adult services needs to be completely person-centred, and appropriately trained staff need to be available to offer support in a specific low-arousal environment.

In terms of changing need, historic funding arrangements in services such as capitation payments do not allow for enhanced and changing needs within service provision. With no mechanism in place to address the changing need and additional resources required, this causes a service deficit for the individual and a challenge for the provider. An agreed assessment and resource allocation model is required to quantify the changing needs of individuals receiving services to ensure a rights-based approach is in place for all individuals availing of day services.

Finally, I will turn to personalised budgets. This model of support is in line with a rights-based approach and the Assisted Decision-Making (Capacity) Act 2015. The task force report was completed in 2018, yet there is only limited access to personalised budget services across the country, with no new funding being allocated to develop this model of support in day services for school leavers in 2024. I thank the committee.

Ms Sarah Molloy:

I thank the committee for its invitation to discuss the rights-based approach in day services. Ability West has been providing services and supports to children and adults with intellectual disabilities for over 60 years. Over 600 people avail of our services and supports in 13 geographic locations. We have 29 day service locations across Galway city and county. Ability West's guiding principles are: placing the fundamental rights of the people we support at the centre of everything we do empowering each person we support to live self-directed lives and to play a meaningful role in all aspects of community life; listening and developing a variety of options that can be used flexibly to meet their identified needs; developing the skills and dedication of our staff in a supportive and motivating environment; and working in active partnership with the people we support, families, staff, our voluntary supporters and the broader community.

The New Directions policy introduced by the HSE represents a significant shift towards a rights-based approach. This framework is designed to move away from traditional centre-based models to more individualised outcome-focused supports, promoting greater autonomy and community inclusion for individuals with disabilities. One of the key elements of New Directions is flexible and individualised service. This can be difficult to implement, as the current structuring and funding for services is only really from 9 a.m. to 5 p.m. The HSE has developed interim standards and an evaluation, action and service improvement, EASI, tool for us to use. This allows services to align their practices with the New Directions framework, which further allows for feedback from service users, staff and management. While New Directions is progressive, it also poses several challenges. All day service staff in Ability West need to be adequately trained and equipped to deliver a rights-based approach, overcome financial barriers and maintain consistent quality across diverse service locations. Overall, New Directions is a transformative initiative and needs to be funded accordingly.

I will now turn to developing rights-based funding conditions, SLAs and indicators to support the transition to a sustainable rights-based day service. The HSE is moving towards more individualised, locally based services. This allows for the decongregation of institutional settings under the New Directions initiative. Funding supports are required to allow this model for a rights-based approach. Ability West identifies with this model but there are extensive costs to resourcing more local individualised and smaller locations. Ability West currently struggles to adapt to meet the needs of the ageing population. Meeting the needs of ageing adults with intellectual disabilities and autism requires a new structured and funded model of support. Many older people came into our services decades ago, when congregated living and large group-based day services were the main funded models of service, based on block funding allocations. The funding model changed in 2015 for school leavers accessing day services, which was a very welcome development that enabled more individualised responsive supports to be provided. For many people who entered day services prior to 2015, however, the funding model has not changed, with nearly 35% of people attending day services in Ability West being over 55 years of age, and 8% of these people having a diagnosis of dementia. Greater overall investment in disability services is essential in order to meet the growing and diverse needs of the population. The process to secure additional funding for changing needs can be complex and slow. There is a need for a simpler process for funding.

On the issue of ensuring support for transitions to further education and employment in line with the UNCRPD, unfortunately, a key barrier to realising rights for people with disabilities is that they do not have equal access to fundamental supports in education, employment or transport. Ability West would welcome a robust and ambitious plan to address the high rate of unemployment among people with intellectual disabilities. Day services can play a vital role in addressing this inequality, but the reality is that with the shortfall of staff and resources in day services, staff often need to stay in day services for the day-to-day running of these services and do not always have the flexibility to be out in the community providing one-to-one support in an employment or educational setting. People using day services also face the barrier of accessing transport to get to their place of employment or education, especially in rural settings. Although the HSE provides one-off buses, it does not provide the recurring running costs associated with the bus. This needs to be reviewed.

Loss of services during Covid meant that some people with disabilities stopped coming to their day services, and some of them did not come back. The Covid-19 pandemic significantly disrupted disability services in Ability West. This disruption highlighted several critical issues and many lessons were learned. Those lessons include the need to focus on the importance of flexibility and adaptability for a rights-based approach in day services. While many people were delighted to return to day services, there were also those, including many over the age of 55, who expressed their will and preference to have their day service provided differently. Other lessons include the importance of strengthening remote and hybrid models and better individualised communication and support networks. Regarding policy and funding support, Government policies and funding need to prioritise the sustainability of disability services to ensure that they can weather crises without severely impacting on the individual.

There is a lot of good work being done in day services but there are still a number of barriers to fully effective services. These include the inflationary pressures of costs associated with day services, a recruitment and retention crisis, growing unmet need and a lack of funding for changing needs as people age. Service providers are experiencing a crisis in sustaining quality rights-based supports. Appropriate and sustainable resourcing is required across all aspects of service provisions. I thank the committee for listening. I hope we can focus our efforts going forward.

Michael Moynihan (Cork North West, Fianna Fail)
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I thank the witnesses for their contributions. We will start with Deputy Tully, our Leas-Chathaoirleach.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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I thank our guests for their presentations. They all identified the same issues. The first of these relates to staffing and the pay parity issue, or the pay disparity that still exists, especially for section 39 organisations. I know Mr. Meany said that Delta Centre is a section 39 organisation. I do not know whether Ability West is under section 39 as well. The WRC agreement from last October has not been honoured. I followed up on this issue, which is really affecting day services in my constituency, and was told there were supposed to be more talks this month. Has there been any update or progress in that regard? I know the staff retention and recruitment issues do not just apply to section 39 organisations as there are also issues within the HSE-run section 38 organisations. Mr. Meany made the point that people are moving away from careers in social care. Why is that the case? What can be done to address it? Is it just a lack of people qualifying in those areas? Is it something that needs to be addressed at third level? Are there other issues that are affecting it?

The witnesses also referred to assessing the changing needs of service users. Some of this is due to age or to other changing circumstances. What will address that? Is it more funding, a change in the model or a change in the approach to doing that?

As regards school leavers, it was previously the case that some 18-year-olds left school and went straight into a service which they never left. I welcome the fact that there are new initiatives out there and that many more young people are going on to higher and further education. I hope to see an expansion of that. It is unfortunate that there does not seem to be career guidance in special schools. That is an awful miss and we need to consider it further. I know from engaging with parents in Cavan and Monaghan in particular, especially those whose children attend the special school there, that the day service and training units there are at capacity. Even if they were not at capacity, they are not suitable to some of the children who have more complex needs. There is a level of unmet need there within the service provision. We need to look at all of that. We need to look at more young people going into higher and further education. Some young people will go into the current services but it may be that more of them will need something a little different as well. Do the witnesses have any thoughts on that? I will leave it at that.

Michael Moynihan (Cork North West, Fianna Fail)
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Who would like to start off? Maybe Dr. Harnett might start.

Dr. Alison Harnett:

I can come in on some of the questions and will welcome the input of my colleagues. I thank the Deputy for her questions. On staffing, pay parity and the update from the WRC, the agreement that was made was for an 8% uplift, which was very welcome and certainly something that was achieved for workers in section 39 organisations.

However, since that has been agreed there has been a 10.5% agreement for the public sector and section 38 workers and so, unfortunately, that gap is widening again. If you were in a section 39 organisation seeking to recruit people to work in your service on behalf of the citizens, who have the same rights as all of the citizens who are supported by section 38 or HSE services, it is very hard to convince a potential staff member that you are offering the same package where there is already a 10.5% uplift on the table for staff working in section 38 organisations. The WRC agreement for the 8% is being concluded in terms of the payment and all the processes at the moment. The new talks, which began this month, are to look at how we will close that gap and get to a situation of pay parity every time there is an uplift in the pay of section 38 and HSE workers. The citizens who access services that happen to be funded by a section 39 agreement need to be assured that they too will be treated with parity just as the citizens who access those supports have equal rights. The talks aim to get to pay parity by the end of the successor to this agreement and I hope that will be achieved. We welcome the support of all Members of the House in focusing on that issue for the rights of people supported by any kind of section 38, section 39 or HSE services.

In terms of the qualifying piece, I might leave the recruitment questions for some of my colleagues and I might briefly speak to the Deputy's question about assessing changing need and what would address that. My colleagues will have lots to say as well. With regard to changing need, I will give a couple of very important statistics. My understanding is that the gene on which Alzheimer's disease sits that there are three copies of that gene for a person with Down's syndrome, to take an example. That means that many more people with Down's syndrome develop Alzheimer's disease in earlier age groups. Many of the people we support who have Down's syndrome would have Alzheimer's disease in their 40s. In general terms the IDS-TILDA project has identified a vast range of matters to do with intellectual disability and ageing and it is a very valuable study. What it does show is that there is premature ageing for people with intellectual disabilities and that means their needs change too. For instance, if we had a sleeping house where the staff sleep overnight, that can change very quickly to the need for a waking night staff. Similarly, in day services, where somebody might have needed support within a group of people, their needs may become that of one-to-one support. Currently, there is no budget line in the funding provided to our services for changing need, and so people make business cases or try to move funding around when somebody's needs change. What would help is if there were a structured model of assessing needs as people's needs change and that it would lead to a clear pathway to funding their different needs that have now occurred as a result of the change associated with their ageing.

There is a movement to provide career guidance in special schools, and that is something for which the National Federation of Voluntary Service Providers has advocated very strongly for a number of years, so we welcome the news there is due to be some progress in that area because, as mentioned in our opening statement, we need to be extremely ambitious and have a vision for the young people we support in our schools. They have exciting lives ahead of them and goals they can achieve if they are listened to, understood and they are helped with their goals, along with their families, to have a broad image of what can happen in life that includes employment, education and full integration in community life. Careers guidance counselling in special schools is a very important part of that.

I invite some of my colleagues to join the discussion, in particular with regard to recruitment and retention and the day service capacity for people with additional and greater needs.

Mr. Joe Meany:

The issue of recruitment was addressed by this committee back in March. It was acknowledged by the HSE as an issue. The issue of recruitment and retention for us has been the single biggest issue for delivering quality-based services over the past two years. To ensure there are trained, consistent staff across services providing new directional supports, we require equity of pay. We will be repeating ourselves here but equity of terms and conditions across the sector, including maternity and premium payments, are so important because people are choosing with their feet. Our workforce is young and predominantly female. If they wish to apply for a mortgage or maternity leave, which employer will they choose? Will they choose the employer that has fully funded maternity leave or not? Will they go to the employer who is paying 2024 pay scales or 2021 pay scales? They will go for employers who have higher pay scales. In one 15-month period during the past 24 months, we recruited 87 people. Think about the workload to recruit 87 people, the number of interviews and the amount of added work. When we should be focusing on delivering services, we are focusing on recruiting. I spoke to one service provider during the past year and they told me they recruited an entire front-line staff during a 12-month period. There was a full 100% turnover. I read a recent extract from a recruitment website regarding our service which said it was a great place to work but had poor pay, almost zero increments, and pay was not up to standard by any means. This type of environment is out there and so people in section 39 agencies will struggle hugely to recruit in that kind of environment. What we do is we recruit, and while all people go for all jobs, the most qualified and experienced staff tend to go for higher paid jobs and are getting those jobs. Section 39 organisations often get newly qualified people who stay with us for a year or two and then move on to get the better paid jobs. It is a huge issue for us.

With regard to the other issues mentioned, I agree with Dr. Harnett and would welcome the occupational guidance for people in special schools.

With regard to changing need, Dr. Harnett has outlined the fact it exists and is a real issue for us. We have people from when we started in 1990. A lot of people were 20, 21 or 22 years old at that stage. Now it is 35 years later and many of those people have added conditions and they would have come into us on a capitation payment of maybe €5,000 or €7,000 and it is so far away from their support needs now and yet, as Dr. Harnett said, there is no funding. Not only that, there is no mechanism to measure that support need because the profiling tool can only be used for school leavers. There is no agreed mechanism. In 2011 to 2015, the NDA studied four assessment tools. It wrote a report and informed the Department at the time. It was going to be announced that a national resource allocation tool would be agreed and we are still waiting.

Ms Mary Foyle:

Ability West has same issue as the Delta Centre with regard to recruitment and retention. We had to change our approach and attitude to recruitment. We now spend significant time on recruitment. We have to invest a lot of time, energy and resources on the onboarding piece. Sometimes we find we have done significant work in onboarding and then the person will leave after that year because they have the experience to move to a different organisation where the pay is different. That is a big concern for us in Ability West. At one stage we had something like 70 vacancies and we had to put immense work into recruiting to be able to provide our services at a local level.

Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail)
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I thank Delta Centre, Ability West and the National Federation of Voluntary Service Providers for being here. As a Carlow woman, I know the Delta Centre very well and work with Mr. Meany and his team a lot. My nephew attends day services there and he is my godson. I have a first cousin there as well so I am very much aware of the Delta Centre. I have met Mr. Meany on several occasions to discuss this and, as he stated, the biggest issue is section 39. It affects all of the organisations represented here and it is a huge worry. It worries me in the sense that recruitment and retention is a huge issue and even Mr. Meany saying he recruited 87 people this year. While I know he has a staff of approximately 250, and that is a lot of staff, as he said, a lot of them, who are lovely and I know all of the staff there and you could not get better, are inclined to move on because section 39 organisations cannot compete with section 38 organisations. That is the reality. As a Government we need to address this issue and we need to work on this.

I have said this to Mr. Meany. I can only say from my own point of view that the service Delta Centre gives the people of Carlow and the surrounding areas is phenomenal. It is like a home from home. The problem, as Mr. Meany and the rest of our guests have said, is when you are constantly fighting battles. Transport is a huge issue. I am sure it is the same for them all. It is not knowing exactly from day to day.

As Mr. Meany stated, current transport supports are unclear, inconsistent and lack transparency. Many families that have people going into Delta Centre would need the transport and they need that communication. Working with the families, there is huge commitment. I know Mr. Meany and his team and all the committee and all the members that work there. They all work together because there is that great sense there, but there are huge issues.

The other issue I would be afraid of is what Mr. Meany said about equal access for new entries to day services. Has Delta Centre a waiting list for day services? Has it a waiting list for assisted living?

I note that Mr. Meany give the figures for respite services. While 66 people are able to access respite services, are there 62 people who are on a waiting list?

As a Government, we need to work tirelessly with these groups to get section 39 organisation equal pay done for them. That is the first thing. The second is funding. Funding is a huge issue because when you are constantly fighting for funding, whether it is for services or transport, it becomes hard. I know - am sorry about this - I have only been to the Carlow Delta Centre but it has a huge horticultural area. They have the most beautiful gardens. People go there and often get their wedding pictures taken there. They have a lovely coffee shop. I know the service users learn so much and the families are so happy that they are in such an excellent facility. It is just important when one has that many services. Delta Centre has 12 HIQA-registered community living services. I have been to most of them, by the way.

All I can say to those from Delta Centre who are here today is that their services are vital. We cannot exist without them. There are families out there that would be lost without them. That applies not only to the families but also to the service users. My nephew Jamie - he will not mind me mentioning his name - who, I think, is watching today, loves going into Delta Centre. That, for him, is part of his routine. It is part of what he does every week. He has his days. He has his friends. It is life-changing for the users.

Reference has been made to the section 39 organisations. We need to work on the funding. I can assure them that all of us on this committee are very much aware of the needs that we need to help them with and of our commitment to working with them for funding, transparency and doing what we can, particularly on section 39. How many times have I met Mr. Meany about this? In fairness, I have been to the Ministers. I will continue to work on behalf of all of them because nothing can replace the vital service that they give to their areas. I thank them again for what they do.

Michael Moynihan (Cork North West, Fianna Fail)
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We will start by calling on Mr. Meany of Delta Centre to respond. Carlow to Carlow.

Mr. Joe Meany:

Transport has been an issue for years, not only in Delta Centre but across the country. I started with the HSE in 2001 and within six months I was on a south-east committee for transport. We all thought we were going to resolve the issue back then. It was not resolved and it is still an issue. I am aware that it was discussed again, in March of this year, at this committee and one solution that was being put forward by the HSE was Local Link transport. It may be a possible solution in some cases. All agencies, including Delta Centre and Ability West, are always looking for local solutions if we can find them. We would have found existing transports for people in the past year using public transport when we can avail of it but, by itself, it is not enough. We were travelling up here today and we saw a gentleman with a disability getting a bus in Dublin. He had access to public transport. I am sure he has a free bus pass and he was able to get off the bus and go to his home and it was perfect. Down where we live, we cannot do that. Many of the people who attend Delta Centre are in a rural setting and there is no transport.

In fairness, the HSE does not have the resources to resolve this issue. Nationally, we have to agree that a Department or Departments are responsible for transporting people to access day services. A nationally funded transport model needs to be agreed so that everybody has equal access to transport. There is existing infrastructure that may be possible as well. We have our own buses but when we looked at it closely, as somebody mentioned in their opening statement, we found that the HSE buys buses but it does not fund the ongoing costs. The ongoing costs are eating away at services because they are diluting other services whereas we are having to target money towards transport that we are not being funded for. However, there is an existing infrastructure there. If the Government can agree what Departments will fund transport and then deliver a sustainable model that ensures everybody can avail of transport, I am sure service providers would be open to delivering transport if it is funded appropriately.

With regard to the comment on the respite, we have 62 people on the list. We are in the middle of a submission at the moment that we will submit to the HSE for a second respite house because we absolutely see the need for that.

With regard to the assessment of need, I am probably repeating what I said earlier but there definitely needs to be a national resource allocation model and assessing people when they can come into day services so that, whether you are a school leaver or not, you are able to be assessed and then resources can be allocated to you so that you can get a rights-based service.

Dr. Alison Harnett:

Further to the Deputy's comment about the funding and constantly fighting for funding, one of the most powerful things that could happen would be for the full funding of the disability action plan to take place across the next three years. It is a exciting opportunity for strong investment into the sector. It needs, I suppose, multi-annual funding planning.

What is happening at the moment is that across all of the areas that we work in, whether that is residential or day services, we respond in-year and in the residential space, we respond in crisis. That is because we do not have funding that is secure for more than a year. It is a really expensive way to meet people's needs. If we take the day services example, what happens is that we are trying to lease or rent properties in the year that we need them at a very expensive rate instead of being able to plan for that. We know that people have an intellectual disability, I suppose, uniquely, from the time that they are born. It is not really an emergency that we enter into because it is a fully predictable planned need. What we really want to do is to be able to plan for those needs in a way that is good for people's outcomes, community based, integrated and good for the public funding as well because it is expensive to be consistently supporting people on solutions that you provide for in the year that they arise. If everybody could get behind the full funding and disability action plan and if we could begin to move to multi-annual funding, even if that is only nominated a number of years ahead, we would know we would have the safety to make the investment in planned support.

One of the key areas that we need to plan in terms of day service is for the demographic change. We have mentioned autism on a number of occasions across the services. People who have intellectual disability and autism need quiet spaces when they come into services. That requires capital investment and planning so that you can have the break-out rooms, the sensory spaces and a bit of outdoor space, etc. That has a cost that is different from that for people who might need something that is more integrated with a lot of other people. It is really important that we are planning ahead and not doing things at the last minute. That requires a couple of things. It requires transition planning but it also requires funding on a planned basis and not in response to an emergency or in-year requirement.

Ms Mary Foyle:

We are in a similar situation to that Mr. Meany and Dr. Harnett spoke about. Galway is a broad county, from Clifden across to Portumna and Mountbellew.

We depend very much on transport. There is complete underinvestment in transport for the people we support. We want to deliver localised services, but we do not have that hop-on-hop-off option when it comes to buses. We need investment in transport in order to allow people to attend our day services.

Regarding assessments of needs, we have developed our own system whereby we have identified a gap between unmet needs and where we should be. Again, there is significant under-resourcing in the context of unmet needs and changing needs at Ability West.

Dessie Ellis (Dublin North West, Sinn Fein)
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I thank everyone for their input. I find it quite frustrating that we keep coming back to the issue of section 39 workers. This is about the recruitment and retention. So much energy that could be directed into other areas is spent on this matter. It is frustrating. I hope the Minister and the Government will take not and address this matter at some point. The people and organisations coming in here constantly mention it.

Two thirds of the disability services provided on behalf the State are provided by the voluntary sector. That shows us how big it is and how big an issue it is. The amount that is being covered is massive. With the funding that is available, it just seems unfair. I do not believe it is being funded in a proper fashion.

People mentioned Monday to Friday, 8 a.m. to 3 p.m., when supports are mainly directed. What about after hours or weekends? It seems there is a lack of support then. There are also issues in respect of getaways, holidays and social and recreational issues that need to be addressed and funded. I wonder what the witnesses’ opinions are on those.

Regarding ageing adults with intellectual disabilities and autism, it was mentioned they need additional supports, for health reasons or otherwise. Perhaps the witnesses could outline some of that.

Of course, there are inflationary pressures associated with everything. That matter needs to be addressed.

A proper complaints procedure is needed for the rights of an individual. If local procedures are not working, then issues cannot go forward to the independent arbitrator. Can the witnesses give us an insight into their complaints procedure? Is it working? Are we getting the benefits of these complaints? Are they being addressed in many ways?

The HSE regions and restructuring plan were mentioned. I am not clear what all that entails. Is that CHO 9, for example, and all that being changed around? I do not know what benefits that has. Perhaps the witnesses could give us some insight into that.

Mr. Stephen Boyle:

I wish to touch on the Monday to Friday, 8 a.m. to 3 p.m first. The current structure in funding is 9 a.m. to 5 p.m. The Deputy mentioned getaways and so on. We are guided by the New Directions policy, which is about community inclusion. When one thinks of the community, much of the good stuff is happening at weekends and in the evenings. We rely on the commitment of staff, who are supposed to give up their time and try to be flexible in their working week, which is not always doable. It comes back to the New Directions policy. In order to do it properly with staffing levels, sometimes you just need it in the day service, and to get into the community and be an active citizen is not always realistic. That is happening weekly. Someone could call in sick or there could be a number of reasons. In order to be fully compliant with the New Directions policy, it is not always doable. Again, it comes back to transport, which was already mentioned. To get into the community, we need transport. We have many day services in rural settings and you are not going to walk to some community events. You are relying on transport unless you live in an urban area where you can walk or there are city buses. However, services are not always reliable.

It is hard to do 8 a.m. to 3 p.m., but staff are doing it as best they can now within the existing measures. Someone else might touch on the CHO restructuring and give us some detail. I know it will be put down into more regional areas. Where we are at the moment is Galway, Roscommon and up to Donegal. Somebody might have more complete information on that to provide to the Deputy.

I echo the points on recruitment and retention and how much time it takes away from service. Trying to concentrate on staffing is taking time away from the people we support.

Mr. Joe Meany:

With regard to breaks and the after-hours service, the respite would be our only break, but that is for a limited number of families – six, as I said. Regarding after hours, as Mr. Boyle said, the resources allocated to day services are roughly 30 hours per week. We try to offer those supports if and when the person chooses to have them outside the 30 hours a week. In other words, if they want them on a Saturday or something like that, they can have them. However, it does impact on some day during the week. In other words, if they take six hours on a Saturday, it will reduce the Monday or Tuesday during the week, for example. That sometimes can cause issues because families may not be there and then have to be at home. It is not straightforward. Though we offer it, it is not always straightforward. It is not always taken up, but it is there.

We also have a community support model very much in its infancy whereby people have the option to do after-hours supports, but that has to be funded through the HSE. It is not necessarily funded through day services, but it is available to a small number of people at the moment. Hopefully, that will grow.

Regarding ageing adults, I reiterate that since Covid we have a number of people, including a small group of ageing adults, who are choosing not to return our traditional day service for a variety of reasons, whether they decide it is no longer for them, they do not want get up in the morning or they do not want to be in the noisy, busy environment that day services sometimes are, and they just want their own calm, they want to get up when they want and they want to do what they want when they get up. From that point of view, we have to support them in their own homes. If we do not do that, we are not giving a rights-based service, but by doing it, we are creating a staffing deficit for ourselves. The person who might come to the centre might be in a small group of one to four people. Whereas now they are in their own house, if it is residential property, and the staff going out to them cannot be in the service. Therefore, there is a staffing deficit in the service. While the HSE has acknowledged and is well aware of the issue, there is no funding mechanism to get support for it at the moment, so that is an issue.

On the complaints issue the Deputy mentioned, all I know is that I get plenty of complaints from service users if a bus breaks down or something like that, and they do. I get complaints very quickly. We have an advocacy group that was set up in the past year. It meets and we get the complaints in. It seems to be effective. The complaints get to me, anyway, and I try to react to them as best I can.

Dr. Alison Harnett:

I welcome the question about inflation because I think what members are hearing today is that our disability services are to some degree in a perfect storm of sustainability challenges, one of which is inflation. There is non-pay inflation, for example, the cost of electricity, food and transport has been rising. When you provide supports across the life cycle, which could be in residential supports that will be 24 hours a day, or in day services, where you want to be out in the community, there are costs associated with inflation. Fundamentally, the school leavers who have come in to supports and services have been, as Mr. Meany mentioned, part of a banding and profiling process. However, those bands and profiles have not changed over the past number of years. From an inflationary pressure point of view, that means what the banding for the lowest or highest level of support bought you three years ago does not buy that now. We are constantly chasing the number of issues the Deputy raised, whether those are the inflationary pressures, the fact that the supports cost more but the banding has remained the same, that there is a lag in pay for section 39 workers or that the changing needs of adults does not have a funding line.

At a broader level, what is really happening is that the fundamental stability of the services and supports provided in a disability context are actually in question. That is what is most difficult for members, when you add up all of the issues we are speaking about today. Our members are on what I have described as a precipice. We have a mountain and on one side, members have an option to make the most rights-based services and supports they possibly can and, on the other side, there is an imperative not to trade recklessly. At the bottom of that mountain is the governance of the organisations. There are rules and regulations that mean that organisations must adhere to financial guidance. They must also provide rights-based supports. At the moment, those stability and sustainability issues are causing very significant difficulties for the boards of governance of those organisations in maintaining stability and a rights-based focus, when all of the challenges that have been spoken about are added up together. It is not just even one of the challenges at a particular time but the one that was mentioned there, inflation, is a real challenge as well, alongside all of the things that members have been speaking about. That is one really key thing.

I will just speak a little bit as well about the regions and the restructuring. The HSE is moving to a new structure where there are six regional health areas. They will have an awful lot of autonomy. There is a regional executive appointed to each of those six regions. Later this year, the CHOs will be stood down and there will be six regions. A lot of the decisions in terms of funding will be made at those six regions. What we are very happy about is that the move to the Department of Children, Equality, Disability, Integration and Youth has meant that there is a commitment to continuing oversight of where the disability budget will be spent. That is a really good thing, so that we are not lost in the wider HSE when the restructuring happens. We will wait and see how that plays out in the restructuring but that is a big piece of change that is happening with regard to how our members will intersect at local, regional and national levels.

Erin McGreehan (Fianna Fail)
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The witnesses are all very welcome to the committee this evening. We have covered a lot of the challenges with regard to the absolute necessity that we have equalisation in pay, multiannual funding and proper capital investment in physical infrastructure and transport. Huge extra costs that have been put on to organisations and services like those represented by the witnesses with respect to the cost of living. We are sitting here in the disability committee and advocating for extra funding and services but part of our remit is to ensure we have rights-based services that are about looking after the individual. They are contingent on each other because if we do not have the resources or the infrastructure, we are not delivering the service that is envisioned in the New Directions policy. That policy has been around for a quite a while, since 2012. We ratified the UNCRPD in 2018. Given the discrepancy in those years, from 2012 to now, do the witnesses think the New Directions policy has failed? If so, has it failed because you were basically given a document with fantastic, legitimate and proper policies and tools but with no resources?

The focused policy assessment on adult disability services is going on now. Do the witnesses think this could be a kind of stepping stone towards looking at those gaps, assessing them and auditing them in a way that says, "In my service, we have this; we do some things really well because we have whatever, and we start assessing it". Maybe I am being too ambitious. It is about looking at a service individually and saying that it is doing something really well and it has the capacity for that. On the flip side, another service might be doing something that another service is not doing well. Do the witnesses think that the new review - the new policy assessment - is going to open up those gaps and try and support the witnesses to facilitate them? We know they are absolutely important. A person's autonomy, will and preference is what we sitting here every week to push for. If we do not have staff to carry out and to listen, if we do not have infrastructure to have the safe space, and if we do not have transport to have that community engagement, as the witnesses said themselves, the entire circle is falling apart. That sounds very negative with regard to the services. I know the services in Louth - I deal with them and I deal with the service users - and I know they are fantastic. It is about pulling it out, trying to make it better, supporting staff and service users, and supporting the development of it into the ideal that we really want. The ideology is fantastic and our policies and wants are really important, but we do not have a method to get there. Do the witnesses think the Department is engaging adequately to get that method? That was a long-winded way to get to a very small point. I thank the witnesses.

Dr. Alison Harnett:

I thank the Senator. I might bring my colleague Teresa Mallon in on this part of the discussion, if that is okay. I will go a little bit backwards on the Senator's point before I ask Teresa to support me in this one. The Senator has mentioned the delivery of New Directions from 2012 onwards. I think we want to acknowledge a few things. I do not think the policy has been a failure. I think that one of the only areas of really strong investment in disability services over the last ten years has been for school leavers coming into day services. We must acknowledge the very good work that has been done to make that happen. I also think it has been a demonstration of the commitment of the voluntary sector. I think it was in 2012 - it was one of the years during the economic downturn when there really was no funding - that the voluntary services in disability got together with the HSE and agreed that they would take the school leavers of that year without funding. That is a sign of the commitment of the voluntary sector and the collaborative working that can happen.

There are some really positive and exciting possibilities that are coming about, particularly with the focus that the new Department is able to bring to disability. I know that next week, there is a consultation on the development of the new UNCRPD implementation plan. I would see a new outcomes-focused implementation plan being really central to getting to what the Senator is talking about, which is having the person at the centre based on their outcomes and rights. We need to have some of those sustainability issues addressed to make that real in people's lives. I know that Teresa is sitting on the development of the outcomes-focused monitoring group that has been set up and will have something to say about that. She will also speak about some of the challenges and frustrations that we have, particularly with regard to areas like supported employment, where we know we could be doing much better for people but the structure is not there to support it at the moment.

There are reasons for hope and reasons for frustration. I think we need to balance that more collaboratively towards a better outcome. We are not where we want to be. The stability of the sector is definitely a challenge that is impacting on that. We want to develop rights-based supports and have people integrated in their communities to the greatest extent possible. With that, I might hand over to Teresa, if that is okay.

Ms Teresa Mallon:

I thank Alison and the Chair. I agree with Alison in that I do not believe the New Directions standards have failed. The standards are extremely positive and very focused on personalised service provision, and individualised service provision for people with disabilities. They are very focused on promoting more inclusive communities for people, the whole area of active citizenship, developing the individual's independence, and improving quality of life for people.

It is also important to put on record a point that Deputy Ellis alluded to earlier about the voluntary sector. We are providing the majority of service provision to people with disabilities in Ireland. Prior to most of the national policies currently in place and the legislation or the new directions policy the voluntary sector was extremely creative and extremely forward thinking. It was really positive and innovative in looking at really good quality service provision for people with disabilities and additional support needs. That was at a time when there was very little funding. They have been around for many years. The sector has been extraordinarily focused and committed to the provision of high-quality, rights based disability service provision at a time when we had not ratified the United Nations Convention on the Rights of Persons with Disabilities and we did not have all of the legislation and policy that is in place now. I do believe we are on a journey. There is a lot of good collaboration and communication happening between the sector, the umbrella bodies, the HSE and the relevant Departments. That is really positive. As Dr. Harnett said, and based on everything the members have heard this afternoon, the whole area of having forward planning and ensuring sustainable funding is really important.

The sector has had regulation in place for residential respite service since 2013. That put a huge focus on resource allocation to residential respite services because of it being regulated. With day services, it is fair to say that we are the poor relations in that regard because all our focus was putting in the regulated services, from a Government perspective.

We welcome the whole monitoring of day services going forward. I sit on the national group on that. It is very positive that it will be outcomes focused. It looks at what is important to the person with a disability in the context of their life. It looks at the whole person-centred planning process and the quality of that and how good it is. It looks at how we support people to look at their life vision and to develop really good goals. This is very important and we welcome that. There are lots of positive green shoots happening at the moment and going forward.

One of the earlier questions talked about the area of recruitment and staffing. It is fair to say there are significant challenges within the section 39 agencies because of their historic funding situations. I represent a section 38 organisation. It is a very large organisation and there are significant challenges within those services as well and particularly in the Dublin region because obviously a lot of agencies are competing for the same category of staff and so on. This has a huge effect in staffing and provision of quality services. Some services would say that at this moment in time they are at a point where they are only able to deliver a safe service rather than a quality service because they have so many vacancies. All of those elements impact on our ability to be able to implement the new directions standards. We are working on this together but, as everybody around the table said, we need a really good plan and we need sustainable funding going forward. As Dr. Harnett said, while it has been extremely positive, the focus of funding has been towards school leavers and not to the existing cohort of people that we have been supporting. In that sense we have a situation. The nature of our service is that we support people from early adulthood to end of life. When somebody enters our service at 18 years of age he or she will most likely remain with us for the rest of their life. We have not had an individualised costing model of funding for those individuals and as needs change we do not have the appropriate funding to meet their needs. We are on a journey and it is positive there is a lot of collaboration happening in relation to all of this at the moment.

Erin McGreehan (Fianna Fail)
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I will follow up on all of that. We need sustainable funding but how does the move towards personalised budgets work for the service model? How does that interact with the potential for sustainable funding?

Ms Teresa Mallon:

I would not have enough information on that. A national pilot project is happening at the moment in relation to personalised budgets. At some point a report will be launched on how that particular pilot project has worked out. Perhaps Dr. Harnett has further information on that.

Dr. Alison Harnett:

We are at a point in time where very few people have actually had a personalised budget. We are in a position where we are waiting for the evaluation of that pilot to see how this can be afforded to more people as an option. As Ms Mallon mentioned, since 2015 there has been funding in for those people who are leaving school and there is a cohort of people who have been in services a lot longer and there has not been the same level of investment possible for those people. While services move as much of their resources around as creatively as they can when monitoring comes in there is a gap. It is true to say there will be areas of the service that people really want to improve to access that rights-based approach we are all signed up to and want to deliver. With those staffing difficulties, as outlined by Ms Mallon, this affects section 38 organisations as much as section 39 organisations but in different ways, and until some of these problems are ironed out it is really a challenge to deliver the kind of service and supports that are wanted by all stakeholders. The personalised budgets have not really had the impact in volume yet because they have been for a very small number people.

Mr. Joe Meany:

On the personalised budgets, the task force reported back in 2018. Covid happened after that but the sooner it reports the better. I believe that 291 people were involved in the personalised budget process. Of the 291 people 70 are at different stages of the model, only 50 people are actually availing of a personalised budget that I am I aware of, and 170 people withdrew from the model. One needs to ask why they withdrew. The personalised budget process at the moment is only allowed for people who have existing allocations. The person has to go in and give up his or her existing placement, which is not straightforward. Then the person has to start a whole process so it is not easy for a family or an individual to do that. It is a big process there. I am not sure if I am alone in this but I believe it would make sense if the personalised budget was brought under the banner of day services. There is a structure within days services across the country: there is a day opportunities manager, day opportunities officers in each CHO area, and there will be in each health region area as well. They also have a standards officer and a finance officer so why not bring the personalised budgets into that as well? At the moment I believe it is two staff across the country managing the whole personalised budget. That is never going to grow unless more resources are given to it. If more resources are not given to it, then let it fit into or dovetail with an existing structure already there and let it run that way. At the moment it is not going to grow.

I agree mostly with Dr. Harnett and Ms Mallon with regard to the new directions policy. I would not call new directions a failure. I am around long enough to know there has been huge progress in day services over the years. The processes that have been brought in have really moved day services on in a very in a very good way. I would agree to a certain that there is more to be done. More resources are needed. As we pointed out earlier, there is infrastructure that needs to be worked on. I keep going back to the resource allocation model. This needs to be put in place. In 2015 the National Disability Authority made a recommendation on that and we have not had a decision yet. We need that. There is no doubt that better resourcing needs to happen, along with the enhanced needs piece, and we need to look also at the people who are choosing not to avail of the service.

It is not just the older person either. It is also the person with autism and the young person who decides they do not want to be in that space anymore. Services have to deliver a rights-based service to support them in that home situation. At the moment, the infrastructure does not allow for that, nor does the funding allow for it.

Ms Mary Foyle:

The question was asked whether the new directions policy has failed; it has not. We have a long way to go and lots of improvements to make. If a person we support in Ability West is asked, they are very aware of what new directions is about. They demand that we meet that need and they know we owe them that journey. We are considerably under-resourced and it is a journey. We welcome the monitoring within day services to be introduced next year. It will bring a focus to day services and the lack of resources that is very much felt on the ground.

Seán Canney (Galway East, Independent)
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I thank the Chair and welcome the witnesses. Carla was here and Paul is here now. There has been a lot of talk I have listened to, and I was listening on the monitor before I came to the committee room, about resources, under-resourcing and this type of thing. The witnesses talked about the section 38 organisations and section 39 organisations. I have a reply from the Minister for Finance from last week where he says because the employees of section 39 organisations are privately employed, he has no control over their terms and conditions. If the witnesses were to bring all of their staff tomorrow morning to the same level as the HSE, would the organisations survive on the present budgets? Would the services survive? That is the first thing. We can talk about new directions and it is progressing, but progressing slowly. Somebody was talking about going up a hill and coming to the top of the hill. At the moment, a lot of the services could be stuck where they are at in the sense that they cannot progress.

The population is getting older, services are more demanding, and when I hear that if an individual service has to be done and somebody is sent out to a house or community, it is somebody who may have been able to cater for three or four people in one setting. I can well understand the challenges that are there, but we are at nothing if we do not get the fundamentals right. I know there is not enough staff in Ability West to provide the service. What Ability West is doing is incredible but I do not know how long it can keep going or how long the staff can keep it going because they are doing great work. However, at some stage we have to call a spade a spade.

Is pay for staff the single biggest issue? If that were resolved, would everything else follow from that? Would we have a better service? If we had pay parity between section 38 organisations and section 39 organisations, would that solve problems? Is that a big hurdle to get over? We have a budget coming. We need to know these things. I will make that point and see.

Michael Moynihan (Cork North West, Fianna Fail)
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Very good. We will get Ability West to respond to Galway.

Ms Mary Foyle:

I thank the Deputy. We are kind of in that perfect storm where we are continually trying to recruit and hold our staff. There is considerable underinvestment in Ability West. We are trying to grow our services considerably with a multidisciplinary team, MDT and front-line services. We require further investment.

If we were to have the same terms and conditions, I doubt we would survive. It is very clear that we are section 39. Terms and conditions are very different from section 38 organisations, so we would not survive with the current funding. We do have the fundamentals right. We are very much focused on the service user, the people we support, and their needs. We have exhausted all avenues. We are very creative in delivering our day services across the county, but again, we require further investment across all our services, whether it is day services, respite or residential.

Seán Canney (Galway East, Independent)
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I can see that Ability West has great services across the county in places like Mountbellew, Headford, Tuam or wherever you go. Ability West has a good name for delivering services. I am sure every other organisation has the same thing. If there is smoke coming out of the back of the engine, where are we going? Do we need to replace the engine? We need to do something with it. That is a fundamental we need to get right as a committee. We can talk for Ireland, but how are we going to solve some of the problems?

When we talk about respite services, it is very hard to find overnight respite services. I have had cases where people have had to attend a funeral. There was a case of a couple who needed to go to a funeral and could not go because they could not get overnight respite for their family member. Only one of them could go to the funeral in England. We have had that kind of stuff. I am sure it is being repeated all over the place. We talk about rights-based and quality of service. I think the fundamentals have to be right.

I know that, in County Galway, because of its geographical layout, transport is a huge problem. Trying to get people connected and get people in is something that will not be solved overnight. If the pay issue were solved, would that bring us on a step to getting all these policies and aspirations in place? Would it help provide a secure service and secure the service we are providing? At the moment, we are hitting along on a bumpy road with it.

Ms Suzanne Morrissey Forde:

I thank the Deputy. The Deputy said that the Minister said section 39 organisations are private and that we can pay, not what we want but that we do not have to pay in accordance with the consolidated HSE pay scales. However, when we sign our service-level arrangement each year, we have to sign off that we do not pay above any current HSE pay scale. We really do adhere to the pay scales of the HSE. Most section 39 agencies I know may not be on the current HSE pay scale but they do adhere to some sort of HSE pay scale. In Delta Centre, we are on the 2021 HSE pay scale at the moment. Part of our service-level arrangement with the HSE is that we adhere to a pay scale and will not pay above the current HSE pay scale. We would not have the autonomy to pay a higher pay scale to try to recruit staff who might be in a section 38 agency. We do not pay above those pay scales.

If we were to put in place the current 2024 pay scales the HSE and section 38 organisations operate, in Delta Centre we would definitely run into a deficit within our budgets. We did an exercise a while ago for our board to see if we came up to the same conditions as the HSE in terms of maternity, paying Saturday night premiums and waking nights. It would cost us in the range of €1 million just to match conditions alone. That is without bringing the current pay scales up.

Deputy Tully asked earlier about people leaving the social care service and that it is even hard for the HSE itself and section 38 organisations to recruit. Part of that is probably that on some of the current pay scales, even the 2024 levels, some areas like the care system pay scale is probably still starting out on a low enough level. The hourly rate sometimes does not compare with other industries. They could get a job somewhere else where they are paid a higher hourly rate than they would be starting within a service like ours. That is probably part of the reason some people are moving away from social care and everyone within the sector is finding it hard to recruit and retain staff at the moment.

Like Ability West said, we definitely have the right fundamentals in place but it is probably getting the resources behind it to drive forward on it and get person-centred-----

Seán Canney (Galway East, Independent)
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On that, how will Delta Centre get the resources behind it? When Ms Morrissey Forde says that, what does that mean?

Ms Suzanne Morrissey Forde:

It all comes back to funding at the end of the day - getting the funding there to help push new directions further on and to make sure our staff are trained to deliver the person-centred approach service.

Unfortunately it does all come back to funding to get-----

Seán Canney (Galway East, Independent)
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Is Delta Centre CLG not getting enough funding?

Ms Suzanne Morrissey Forde:

No, unfortunately we are not. We are all trying to work within the budgets we are given. We are given our budget for the year and we are all try to work within that budget and try not to come out with a deficit, but that does put strains on other areas of the service. Even when we cannot retain staff, we are bringing in an agency staff which costs us 69% above our own staff hourly rate. We have to allocate funds to that, which we would prefer to allocate elsewhere in the service to keep a good quality service.

Seán Canney (Galway East, Independent)
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On that point, I want to read out what was said. What was said was that it is important to remember that as these are private employers, and as such, the Government has no authority or ability to change the terms and conditions for these workers. At the same time, is Delta Centre CLG being told it cannot do certain things?

Ms Suzanne Morrissey Forde:

Yes, we have to stay within our service-level arrangement. Part of that service-level arrangement and the compliance annual statement that we sign off on every year, says that we cannot pay above the current HSE consolidated pay scales.

Seán Canney (Galway East, Independent)
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So really the parity between the sections 38 and 39 is not on the agenda for the Minister for Health, Deputy Stephen Donnelly?

Ms Suzanne Morrissey Forde:

We could not go out there and offer a salary greater than that, with the current pay scale-----

Seán Canney (Galway East, Independent)
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If a salary equal to it could be offered-----

Ms Suzanne Morrissey Forde:

We could offer a salary equal to it, if we had the funding for it.

Seán Canney (Galway East, Independent)
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What kind of percentage increase would be needed?

Ms Suzanne Morrissey Forde:

We got the 8% under the WRC agreement which is very welcome.

Seán Canney (Galway East, Independent)
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No. How much does the overall budget have to go up?

Ms Suzanne Morrissey Forde:

We would need about 15% at the moment.

Seán Canney (Galway East, Independent)
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That is a 15% addition to the budget.

Ms Suzanne Morrissey Forde:

Yes.

Seán Canney (Galway East, Independent)
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What budget is currently given?

Ms Suzanne Morrissey Forde:

Our annual budget is near to €10 million from HSE funding.

Seán Canney (Galway East, Independent)
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A 15% addition is €1.5million. What is Ability West's budget?

Ms Mary Foyle:

Our annual budget is about €30 million and I have heard it bantered around that we could double that if we wanted to provide that person-based approach-----

Seán Canney (Galway East, Independent)
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Ability West would need 50% more.

Ms Mary Foyle:

It could. If Deputy Canney had it in his pocket, we could take it. Again we are significantly under-funded within Ability West and we want to broaden, develop and provide better day services and more respite and more residential services.

Seán Canney (Galway East, Independent)
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That is what I am trying to get at. We can cod ourselves all day but we need to get the fundamentals and the budget right.

Mr. Joe Meany:

I have one comment on that. There are different questions here. The wages are one question and that might have one response, but to improve service provision is a slightly different question as well because one is about wages, one is about supporting enhanced need, one is about supporting changing need and one is about a better profiling system to make sure that the school-leavers coming in have better staff resources from that point of view. A series of different questions need to be asked and when added together, this will get the total amount of resources required.

Seán Canney (Galway East, Independent)
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It must be disappointing each year when the budget is received.

Dr. Alison Harnett:

It has been set out by Mr. Meany and Ms Mallon alluded to it earlier also. The recruitment and retention challenges that are in disability services are there for section 38 and section 39 organisations. The section 39 organisations, to answer Deputy Canney's question, have the same challenges in terms of profiling, changing need, changing demographics and the need to deliver a highly personalised approach. Those challenges are shared whether organisations are under section 38 or section 39, and section 39 organisations are doing it with their hands tied behind their back in terms of that 10.5% gap that is newly emerged with HSE and section 38 pay. Fixing only that, however, will not fix everything else.

Equally, I represent section 38 member organisations and currently there is a recruitment pause in the HSE. We were delighted that there was a derogation provided for front-line posts for section 38 disability services. The derogation does not, however, extend to administrative and managerial posts and that can have a very strong affect. When we talk about managerial posts, that might be a person in charge, PIC, in terms of the HIQA related services, it might a director of operations or someone in HR. When those people are gone, it is not merely a matter of administration. It has an impact on the front line. Disability services have a range of stability and sustainability challenges that are quite serious and comprehensive.

Section 39 pay simply cannot continue and it is one of the most fundamental questions. It would only bring section 39 members back to the same level to face the same challenges that section 38 member organisations are facing. It would not be fair to suggest that fixing section 39 pay would fix all of the other issues. There is a range of sustainability challenges that we need to be honest about.

Michael Moynihan (Cork North West, Fianna Fail)
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Thank you. Ms Mallon can come in there.

Ms Teresa Mallon:

Following on from what Dr. Harnett said, while we have all of those challenges in terms of recruitment, change in needs and capital investment, the only one that we have not given a lot of time to is around multidisciplinary supports. We have people with changing needs who need quite a significant amount of additional supports. Within the day services, there is a significant lack of multidisciplinary supports available to people who require it. While we talk about budgets, investment and sustainability and all of that, there is also a requirement to look at how we get the best out of the resources that we have as well. One of the quick wins would be in the context of investment in training and upskilling of existing staff, because the whole model of New Directions is around supporting people in the community, more inclusive models and looking at natural supports. For example, the whole area of supported employment for people with disabilities was mentioned earlier. There has been a lack of investment in training in day services for many years, outside of what is mandatory training. There was a requirement that for those working on the front line, a safe-lifting course needed to be completed and if administering medication, safe administration of medication courses had to be done. All the other training that is required that brings you to a place where you are looking at your model in the context of building more inclusive environments and supporting people within the community, and bringing the natural supports in the community on board like volunteers, for example, need investment to make that happen. That is a quick win if the funding was there to make it happen.

One of the other things that needs to be looked at is cross-government departmental collaboration response. Supported employment, for example, was mentioned earlier on. Years ago, we were in a better place in terms of the numbers of people with disabilities, who our services were supporting, in mainstream employment. These were people with disabilities, with all levels of needs and supports. Supported employment does not sit under New Directions and as a result of this, it has fallen between two stools and is not getting the same focus. There is a national programme called EmployAbility, which is an interim programme, but the criteria linked to those programmes exclude people with disabilities and higher support needs. We know that what works in terms of a model is a whole place training and support model, which has worked well both internationally and in Ireland. It does not sit, however, within the New Directions programme. If we could get that sorted and moving on, that would have a huge impact in terms of the quality of life of people with disabilities, as well as building an inclusive society and looking at natural supports.

There is no doubt that from everything that was said today, there is a significant investment required in terms of the resources under all the teams we spoke about. Equally, it is about Government working around transport and supported employment in order to get them aligned and to make them work.

Michael Moynihan (Cork North West, Fianna Fail)
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I forgot to mention that Senator Eileen Flynn cannot be here because she is chairing in the Seanad. I thank Deputy Frankie Feighan for his patience.

Frank Feighan (Sligo-Leitrim, Fine Gael)
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There were a few questions I wanted to ask but most of them have been asked by our wide ranging committee.

I thank the witnesses for all the work they do and for coming in here with a very detailed submission of the work they do. I heard Ability West is moving up towards Roscommon, Sligo, Donegal and Leitrim as well. That might bring in my constituency. I also thank Delta Centre and the National Federation of Voluntary Service Providers.

The new directions policy seems to be reasonably well received and seems to have made a difference. The witnesses talk about greater overall funding and streamlined funding, but we hear that the section 39 agencies are a challenge and that those whom the witnesses represent find it very difficult to compete with other sectors. This issue has raised its head not just here but across the board, especially with what is supposed to be full employment. It is an area we in the Government need to address. The witnesses have highlighted the inadequacies of the funding and the mechanisms in place.

As I said, a lot of the areas have been dealt with. Will the witnesses discuss their mechanisms and structures used to ensure meaningful consultation and all decisions and policies that affect their service users? How do they disability-proof their consultations which take place internal to their organisations?

I understand that there are advocacy groups but, as regards the complaints procedures, if local procedures are not working, how are those issues brought forward to an independent arbiter? Will the witnesses discuss the complaints procedures?

Finally, we heard that a lot of the recent Government report found that closures of schools and services during Covid-19 had a predominantly negative effect on individual services. How are the witnesses addressing those after Covid-19? I think it was Mr. Meany who said that many people have decided not to come into the services and the organisations are trying to deliver the service at home. What are the challenges in that regard, and how successful have the organisations been in restructuring a lot of these services after Covid-19?

Michael Moynihan (Cork North West, Fianna Fail)
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Will we start with Ability West, seeing as we have gone around the west coast with Frankie?

Ms Mary Foyle:

As regards the complaints procedure, we welcome complaints. We see them as a means of improving our services and having that quality assurance from the people we support - from families and staff - so we welcome complaints because they keep us in check. Whether it be at the local level or right up, if a complaint is not resolved locally, it comes up along the line. We have the advocacy council. It is a good strong group that keeps us on our toes. It meets regularly and meets with our senior management team to address any issues they are concerned about. We welcome that independent advocate to allow us to see where we can improve and where the issues are arising.

We have talked about EmployAbility and employment. A big problem for us is that a number of the people we support lost their jobs during the Covid-19 pandemic. Many people work locally in their own communities, but after the Covid-19 pandemic we found that many of the employers did not welcome the people back. That is a big struggle for us, and we continue to have that issue, but we continue to push boundaries and to find new opportunities for people within their own communities. Following the Covid-19 pandemic, many of the people we support did not return, but we visit, meet and engage with those people at home and welcome them back, probably in a less time-invested, more personable service. They do not want to come into those services where there are the big numbers and lots of noise. Our transport is sometimes at capacity and people do not want to be on the buses. We are in rural areas, and some people can be on a bus for an hour and a half in the morning and an hour and a half in the evening and they do not want that any more. That is where we need more investment in transport, not just buses and the recurring investment, to allow for the contracted routes with the escort. We very much need those escorts as well to support the people en route to our day services. Again, we find ourselves going back out to meet with the person in their own home or in their own locality. There is no pressure for them to come into the particular service location.

I want to address the situation as regards congregated settings. We still have a congregated setting in Galway city where we have up to 100 people coming to one location. We work closely with the HSE on trying to resolve the problem but we are met with the issue of trying to find alternative locations plus trying to resource those locations as well as the resource for additional staff. That is an issue for us at Ability West.

Mr. Joe Meany:

With regard to the complaints issue, we are the same. We welcome complaints and we get them regularly. We have an easy-read complaints module system in place. Every person who uses our service is aware of that and can make a complaint to us. It goes up along the line to the supervisor and will end up on my desk. If it cannot be resolved, it will go to board level.

We started a discussion about advocacy maybe a year and a half ago and, following that, we brought in an external facilitator to discuss advocacy. Following that, we had a number of people who wanted to put themselves forward on the advocacy group. Deputy Feighan talked about meaningful consultation. A number of people wanted to put themselves forward on that committee so then they did. We held an election and the winners of the election are now the advocacy committee. They are currently working out themselves how they want to engage with a subgroup of the board. They will decide how they want to engage in that such that it is a meaningful engagement and not just lip service.

From the point of view of the challenges Ms Foyle mentioned when people decide that they do not want to come back to the service, I would put it in two issues. First, there are the people who are currently in residential services. If they decide they do not want to come back to the service, the day service staff support them in their homes. That presents a staffing deficit now in the day service because they are no longer there. Plus, the ratio, as I said earlier, might be 1:4 in the day service and now it is 1:1 in a house situation. As I said, the HSE acknowledges that, but there is no solution to it, so we are functioning every day with a staffing deficit in the day service because of that.

With regard to people who decide for whatever reason that they do not want to attend the day service and who are living in their own home in the community, that is a slightly different scenario. What we try to do there at the moment is offer what they would have got in a 30-hour week, as per the resource model. We would look at the resources given and reduce it on a pro rata basis of a one-to-one staffing going out to the house. Therefore, while they might not get the 30 hours a week, they would get a qualitative one-to-one service for those hours. The difficulty we would have is that we have no mechanism to record that within the existing system of the HSE. That is the challenge. Also, when that staff member, on a one-to-one basis, is out with that person, they are not in the traditional day service, so we lose them there again. That creates challenges for us, but we talk about the will and preference of people, and this is the will and preference of people. They are deciding that this is what they want, so it is up to us to adapt and to look at ways of managing that. It does need support from the HSE and, unfortunately, it needs additional resources in some cases.

Ms Teresa Mallon:

I agree with my colleagues that everyone in the disability sector welcomes complaints. They have complaints procedures in place. They are aligned to the HSE your service, your say national policy, which is important to note as well. The sector is very good at working on developing accessible versions of procedures and policies to accommodate people's individual needs, including communication needs, easy read and assisted technology in that regard. Again, across the disability sector, there are advocacy groups in place. As Mr. Meany mentioned, some services have got this over the line and others are on a journey in ensuring that people with disabilities are represented at board level, are feeding directly into boards in the context that their voice is represented at that level and are feeding into the strategic decisions of the organisation.

That is a journey and more training and more input and supports are required by the organisation to make that happen. There is a very strong focus within organisations in that regard.

On the position post COVID, to be clear, prior to COVID, the majority of people with a residential placement within an organisation were leaving their home in the morning and going to a day service. Then, while COVID was active, people were remaining at home and in most cases, day services closed. The staff was redeployed to work in residential services. Then, when society opened up, this posed a great challenge because the day service staff needed to return to the day services. It is fair to say that in the majority of cases, the residential services are not staffed or funded for staffing during the day, which is causing a big challenge. In addition, we need to respond to people whose preference it is to remain in their homes, with human rights at the centre of our approach. If somebody who is ageing does not want to return to day services, that is his or her right. We want people to stay in their homes. We as a sector and the federation would welcome a review of this post COVID, to really capture the numbers of people we are talking about here, as well as what the implications are from a human rights perspective, from a will and preference perspective and from a personal perspective. What could the challenges be, what might be the costs and what resources or funding would be required to address this? A review is something we would strongly welcome to move this on because it is a real burning issue at the moment across the sector. I am not sure if Dr. Harnett wants to come in.

Dr. Alison Harnett:

I thank Ms Mallon and I fully support that. We would welcome a review of the will and preference, particularly as it is associated with people who use day services and supports but who have expressed their will and preference not to have them delivered in the way that they were before COVID. That would be a very welcome step forward for those people in relation to their rights. I want to note a couple of positive things if I may. To come back to the question asked about consultation, at a national level we have developed some draft budgetary messages for the Government for 2025. Those are out at the moment for a network of advocacy organisations from among our federation members. There is time and space for people with lived experience to advise us on what the messages should be for the Government in terms of funding and resourcing for disability services in 2025.

In particular, I commend the work of the Inclusive Research Network, which is a network of peer-led research. It is quite unique and has been in a leadership position in Europe and has led to the establishment of other inclusive research networks in other countries. The Inclusive Research Network is supported by a number of organisations; by ourselves, Trinity College and some of the other colleges. It is a group of researchers who have lived experience of intellectual disability and similar to what Mr. Meany was speaking about, they have their committee structure and elect their secretary and their chair. It current secretary is Mr. Brian Donohoe, who works in our own offices. This committee have led the network's own research and its members decide what the research will be about. They carry out the research with support from academic researchers in universities and they publish their research. It is really important that we read and listen to the findings of that. The network has published a number of reports about topics such as living areas, relationships and sexuality. They have also published a report called Doctors and Us, in which they speak about the lived experience of people attending their GP and come up with concrete recommendations on how that can be improved.

If we are to offer an overall statement in terms of this debate, on behalf of all our members, I wish to express the point that while we are discussing resource difficulties and implications, it is really important that we are focusing on people as active citizens and as contributing members of society. Because there are fundamental questions about resources, as Ms Mallon noted we can get into a debate that is very funding focused but the people we support are fully active citizens. They will be voting next week, they attend college and they engage in employment as much as they can. We want to support the further development of that because we are in full employment in this country but many people with intellectual disabilities are not employed and they are a resource available to the country. It is important to celebrate and highlight that the people we are discussing have great agency, great skills and abilities, including doing their own research and consultation.

Michael Moynihan (Cork North West, Fianna Fail)
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I thank Dr. Harnett and call Mr. Meany.

Mr. Joe Meany:

I will make one other point on that. We spent a lot of time talking about day services. I alluded earlier on to the fact that there is a huge structure within day services now from the HSE's point of view but we should not forget that it is the person at the centre of it all. Sometimes, whether it be day service or residential service, we tend to get ownership over a particular service. However the individual we are supporting should never know that; the service should be one continuum of support. That is my message, namely, that we should not let any organisation, be it ourselves or the HSE, etc., create the cracks that people can fall through. To me, the continuum of support is key. It should be seamless and that is what we are striving to do.

Michael Moynihan (Cork North West, Fianna Fail)
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I thank our guests from the federation, the Delta Centre and Ability West for their attendance today to give us their honest appraisal of where things are at. It is hugely important from our point of view, as we are preparing a pre-budget submission. One of the issues we have discussed is pay parity and it was important to have the witnesses feed into that. We really appreciate the time our guests have given this afternoon. There are a number of issues to consider, such as pay parity and sustainability of the services. It is being stated that section 39 organisations are private organisations, not State organisations but ultimately, these organisations are providing a service on behalf of the State and we should always be mindful of that and should acknowledge that. In the debates held previously, even prior to the Labour Court, it was said that the section 39 organisations were a whole raft of bodies. But the real kernel of the issue here for section 39 organisations and right across the sector is adequate funding, that is, adequate funding for people with disabilities and the people who are providing services for them. There is a lot of work to do but as I understand it, there is work being done on pay parity. We will keep doing as much as we can to make sure that is brought to the fore. Moreover, as the committee moves towards making our submission, we need to recognise the unmet needs and the challenges being faced by the providers of services for people with disabilities.

I congratulate our witnesses on the work they do on the ground because it is difficult and challenging. It is important that those who work within the sector are acknowledged, from the very top of the organisations and inclusive of everybody within the organisations. Sometimes people who work in the in the disability sector can get very frustrated with the system and there are complaints and so on that they are not acknowledged for the work. Consequently, I congratulate our guests on the work they are doing, as well as all of the teams in their organisations that provide services for what is 20% of our population at this stage.

On that, our meeting will adjourn. If there are other issues that our witnesses think we should be preparing or that we should be looking at prior to our pre-budget submission, they should feel free to send them to us immediately or whenever they feel is right. Our meeting now stands adjourned until 19 June.