Apologies have been received from Deputy Micheál Carrigy and Senator Nicky Bradley. The purpose of today's meeting is to discuss living arrangements for people with disabilities and it follows on from a number of discussion we have had. On behalf of the committee, I would like to extend a warm welcome to everybody who is attending. From Enable Ireland, we have Mr. John O' Sullivan, chief executive officer, and Ms Gillian Darrer, head of services south and west. From the National Disability Services Association, NDSA, we have Ms Joan Carthy, secretary, and Ms Gráinne McGettrick, member. From the Rehab Group, we have Ms Grainne Fogarty, director of care, and Ms Jonna Goranson, head of accommodation. From St. Joseph's Foundation, we have Mr. Michael Hegarty, chief executive officer, and Mr. David Doyle, project and service development.

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

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

I now call on Mr. John O'Sullivan to make the opening statement on behalf of Enable Ireland.

I am grateful for this opportunity to meet the committee to discuss living arrangements for persons with disabilities. I am joined by my colleague, Ms Gillian Darrer, head of services for the south and west, and we have a number of colleagues in the Gallery as well.

Enable Ireland provides a range of services to more than 13,000 children and 400 adults across all six health regions and employs 1,607 staff. These services include 20 children's disability network teams, adult day services, assistive technology, seating, three residential services and seven respite services, community living services and family support services.

Enable Ireland is also a member of the National Disability Services Association, representatives of which are in attendance today. Enable Ireland's mission is to work in partnership with those who use our services to achieve maximum independence, choice and inclusion in their communities. Our services are designed to support individuals to access mainstream and community settings to the greatest extent possible. This aligns closely with Article 19 of the UNCRPD, and I would like to share with the committee some of the initiatives we have implemented in this regard.

Living Options is a campaign we designed to encourage and assist service owners to consider both their needs and wishes in relation to where and how they want to live both now and in the future. They can decide if they want to make changes to their current situation, or if they wish to start to plan and take action for the future. This facilitates the option to live independently in their community or that they have an alternative to a nursing home, should needs change or an emergency arise.

Our independent living service at Bailis, Navan, is a progressive, bespoke model providing a person-centred and innovative approach to the housing needs of adults with disabilities. Support on a 24-hour basis is provided to five individuals living independently in their own apartments and day support is provided to three individuals living in their own homes within the local community. The apartments are spread out within a three-block complex. The service is delivered in partnership with the HSE and Cheshire Ireland, which is the landlord. Enable Ireland owns a staff apartment in the complex from which the service is co-ordinated. All residents are offered the opportunity to do interview skills training to sit on interview panels. Staff receive very comprehensive induction training, which is mandatory, and training in specific medical needs such as epilepsy, diabetes and wound management.

Jane Fennessy, who is in the Gallery, is a resident of Bailis and has agreed to let me tell her story. Jane is 39 years of age and has cerebral palsy. Until she was 22 years of age, she lived at home with her parents and six siblings. As some of her siblings live independently away from home, she wanted to set this goal also. With support from her social worker, Jane put her name forward for the housing list with Meath County Council. She completed an application form and set up a network of support including family, friends, professionals and local councillors. Then began the waiting game but Jane persistently followed up every two weeks using her network of support to help her.

Through the HSE, Jane was put in contact with Cheshire Ireland, which is the landlord of a number of properties in the Bailis complex. Once confirmed that she was on the housing list, she was offered an apartment, adapted to suit her needs. Jane then applied for rent allowance and living alone allowance and she applied for a package of care from HSE, which is delivered by Enable Ireland. Her package includes 24-7 on call with an alarm system, home support hours for personal care, meal preparation, morning and evening routines, support hours for household cleaning, ironing, etc., and social hours when Jane can go out and go where she chooses.

Recently, Jane moved apartments within the complex. This was her choice as another apartment, one with a garden, became available through Cheshire Ireland. It is located close to the bus stop, shops and pharmacy and she can book a flexibus as part of her social hours for shopping, appointments, cinema and concerts. What Jane loves about her accommodation is that she has got to know friends and neighbours and locals who visit frequently. She is part of her local community. She can decorate her home as she likes. She has contact with Enable Ireland’s home support team and management if she has any concerns, wants to make a complaint or if she is worried or anxious about anything. She can choose what she wants to watch on the TV and can turn if off when she wants to.

There is a property management company she can contact if there are problems with the apartment facilities such as, for example, antisocial behaviour. Importantly, she can close the door and not answer it if she chooses.

I thank the committee for the opportunity to contribute to this discussion. Enable Ireland looks forward to supporting the committee's work in this area.

I thank the committee the opportunity to speak with it today. I am speaking on behalf of the National Disability Services Association, which represents a network of seven of the largest national providers of disability services in the community across Ireland. Our member organisations include Acquired Brain Injury Ireland, Cheshire Ireland, Chime, Enable Ireland, the Irish Wheelchair Association, Rehab Group and Vision Ireland.

Across our member organisations, over 8,000 dedicated staff provide key clinical and social services to over 40,000 individuals and their families every year. Collectively, NDSA organisations manage almost €400 million on behalf of the HSE in providing essential and valued services across Ireland. The services provided by NDSA members are essential to ensuring the quality of life of those who receive them, providing dignity and enabling independence.

When we talk about independent living, it is important to be clear about what we mean in everyday life. Independent living is not about doing everything alone. It is about choice, control, dignity and participation. It means having the right supports, the right home and a real connection to community in order that people with disabilities can live ordinary lives of their choosing. When those conditions are not in place, the reality for many people with disabilities is very stark and includes living long term in nursing homes or medical and psychiatric hospitals that were never designed for their needs, remaining dependent on ageing parents with no sustainable plan for the future or being placed in housing that may be technically accessible but is isolated from transport, services, employment and social life. These are not rare or exceptional situations. They are the lived reality for many families across the State.

The Office of the Ombudsman’s Wasted Lives report documented how people with disabilities are left in inappropriate settings because of systematic failures in planning, co-ordination and accountability. Those findings remain highly relevant today.

Ireland ratified the UN Convention on the Rights of Persons with Disabilities in 2018. Article 19 recognises the right of people with disabilities to live independently and be included in the community, with access to the supports necessary to prevent isolation or segregation. This is a binding legal obligation, not an aspiration. To make that right real, Ireland must take a broader and more practical view of what "support" actually means. Personal assistant services are essential but they are not sufficient on their own. People with disabilities also need rehabilitation and re-enablement supports that build and maintain capacity, promote independence and prevent avoidable deterioration. When rehabilitation is delayed or unavailable, people lose skills they could otherwise retain and temporary support needs become permanent dependency.

The second pillar of independent living is housing and here the failure is both structural and predictable. Disability-friendly housing is not simply wheelchair-accessible housing. It is future-proofed housing that allows people to age in place, adapt to changing needs and live safely and independently over time. Just as importantly, it must be located within communities close to transport, services, education, employment, healthcare and social life. Accessible housing in the middle of nowhere is not independent living; it is isolation by another name.

The National Human Rights Strategy for Disabled People 2025–2030 commits Ireland to embedding the UNCRPD across policy, budgeting and service delivery. That commitment must now be visible in core disability funding, rehabilitation capacity, housing standards and spatial planning decisions, not confined to strategies or pilot programmes.

Independent living is not a luxury and it is not a future aspiration. It is a human right, a sound investment and a clear test of whether our system genuinely values equality. If Ireland is serious about implementing the UNCRPD, then supports must include personal assistance, rehabilitation and re-enablement. Moreover, housing must be disability-friendly, future-proofed and community-connected. This committee has a critical role in ensuring that independent living moves from policy language into everyday reality. People with disabilities should not have to fight, wait or justify their right to live ordinary lives.

I thank the Chair and members of the committee for the opportunity to present on living arrangements for people with disabilities. I am here today with Ms Jonna Goranson, head of residential and accommodation-based services.

Rehab Group is an independent voluntary organisation that has supported adults and children with disabilities for over 75 years. As a campaigning and advocacy body, we represent the voices of 12,800 people who use our services and their families. Our mission is to empower people to live independently and to participate fully in their communities through high-quality, flexible and sustainable services across care, education, training and employment.

RehabCare, our health and social care division, delivers person-centred residential care, day and outreach services, respite, in-home supports and personal assistant services. Our residential services are designed to support people to live as independently as possible, develop life skills and engage in their communities, in line with Article 19 of the UNCRPD. This means real choice, home-based supports and equal access to community life.

Feedback from tenants is overwhelmingly positive, with individuals achieving improved quality of life through supports that enable them to make and exercise their own decisions. However, in recent years the delivery of residential services has become increasingly challenging. The housing crisis is having a disproportionate and acute impact on people with disabilities, significantly limiting access to appropriate housing and independent living supports. We welcome the commitments set out under pillar 3 of the human rights strategy for disabled people on independent living and participation in society. However, these commitments will only be realised if they are matched with sufficient and sustained funding.

One of the most significant challenges relates to changes to the capital assistance scheme, CAS. Housing associations could previously access funding to purchase and adapt existing properties to meet individual needs. CAS funding, however, is now restricted to new-build developments only. While purpose-built housing offers long-term benefits, this approach creates serious short-term barriers, including difficulties accessing suitable land, construction capacity constraints and escalating costs. By way of example, we recently received an estimate of €900,000, including VAT, to build a four-bedroom house in Mayo, which is well in excess of the funding available under the scheme.

There are also ongoing funding challenges for section 39 providers delivering residential services. The absence of annual inflationary funding increases has resulted in significant unfunded cost pressures. Some RehabCare services continue to operate on allocations dating back to 2003 to 2005, which severely limits our ability to meet rising operational costs or invest in building upgrades. Statutory pay increases, including additional bank holidays, further strain already stretched budgets. Notably, no funding has been provided for the February public holiday since its introduction in 2022.

Staffing is another critical issue. Supported housing and home care depend on skilled and committed staff, yet recruitment and retention remain extremely challenging. Persistent pay disparities between section 38 and HSE staff and section 39 providers place significant pressure on services. Personal assistant and home care supports, which are essential to independent living, are under threat. In particular, the HSE decision not to provide for Workplace Relations Commission payments in future disability home care tenders raises serious concerns about the sustainability of not-for-profit provision and the increasing risk of privatisation in the home care sector.

Despite these challenges, RehabCare achieved a 95% overall compliance rate in both 2024 and 2025. More importantly, we continue to see the life-changing impact of appropriate housing supports. Between 2015 and 2018, RehabCare supported 29 people to transition from congregated settings in Kerry into homes within their communities. Those people are now active members of communities in Killarney, Tralee and surrounding areas. One individual, Owen, moved from institutional care in 2017 after living for decades in that setting. He now lives with friends, participates fully in his local community, no longer requires long-term psychotropic medication and is nearing the end of wardship, demonstrating the transformative power of supported community-based living.

Another resident, Stephen, at Parnell Place, Limerick, said this of his experience:

I can say my time here has been 100% brilliant. The team are totally flexible, they assist me with shopping, help me clean my home, and bring me to medical appointments. I get to maintain my independence and privacy, but know there is always someone there. I am taking a course with Meta Academy in computer programming and hope to have a development job by the end of the year. I am very happy here, all my needs are met, I feel safe.

While progress has been made, significant systemic barriers remain. Access to appropriate housing must be addressed alongside the wider cost of disability, including additional living, health, and transport expenses.

I thank the Chair and other members for the opportunity to speak here today. We look forward to supporting the committee in its oversight of implementation of the national human rights strategy for people with disabilities.

I thank the members of the committee for the opportunity to address them today and their continued focus on disability policy at a time when strategic leadership has never been more important. I am joined by my colleague Mr. David Doyle, development officer, whose work centres on housing delivery, capital development and future service capacity for those we support.

I acknowledge and warmly welcome the Government's increasingly co-ordinated, all-of-government approach to disability. The most recent budgetary allocation, the largest annual investment to date, signals a serious national commitment to addressing long-standing gaps. We hope this represents the beginning of sustained investment because challenges of this scale cannot be resolved within a single budget cycle. Consistency will be essential to delivering lasting change.

Operating at the intersection of disability services, housing provision and statutory funding systems allows us to see both what is working and what continues to constrain effective planning. Today, I wish to focus on reform that is both practical and urgent: the expansion of the capital assistance scheme to include dedicated respite housing, supported by planning that aligns capital investment with known and emerging demand.

Strong partnership between service providers and local authorities is achievable. Our experience with Limerick City and County Council demonstrates what can happen when disability housing is treated as essential public infrastructure. Engagement is constructive, processes are navigable and there is a shared understanding that planned delivery prevents crisis, supports families and represents sound public policy. However, such consistency is not evident everywhere. Within the Cork region, service providers are currently operating under a significant structural constraint. Cork City Council will consider only one disability house per year across all providers within its catchment. Assessed need indicates that each provider requires at least one new home annually simply to begin addressing the demand.

The consequences are deeply human. Adults remain living with ageing parents whose capacity to provide care diminishes. Families approach exhaustion. Planned transitions give way to emergency placements. Independence is delayed and inclusion is narrowed. This reality raises a serious policy question. When housing is withheld or delayed because associated support funding is not yet in place, persons with disabilities are being treated differently from other citizens in accessing social housing. Local authorities have a clear statutory role in the provision of housing, while care packages sit primarily within the health domain. Where housing provision becomes contingent upon prior health funding, individuals with disabilities may face a higher threshold than others on waiting lists.

Housing and care must be co-ordinated but they should not be conflated to the point that one system immobilises the other. If this occurs, the effect may be indirectly discriminatory. Equality legislation and Ireland's obligations under the UN Convention on the Rights of Persons with Disabilities emphasise the right to access housing and to live in the community with choices equal to those of others. A system that prevents progress towards housing because support funding is pending risks undermining that principle. Local authorities should therefore be empowered, and encouraged, to provide appropriate housing within their mandate, while parallel engagement with the HSE ensures supports follow in a planned and timely manner. Delaying one because of the other ultimately serves neither the individual nor the State.

Alongside local authority challenges, a related constraint lies in the structure of HSE revenue planning. Core funding is essential but it is primarily designed to sustain existing services rather than enable expansion, yet the HSE's national ability supports system provides detailed data on current and future support requirements. Demand for residential and respite services should not come as a surprise. Without sufficient multi-annual planning for growth, providers cannot confidently build the infrastructure required. Housing takes years to deliver, staff must be recruited sustainably and services must be designed for the long term. When expansion funding lacks predictability, development slows and predictable need becomes emergency demand. When voluntary providers lack the capacity to respond quickly, the State must often turn to private, for-profit providers that can mobilise accommodation at speed. While sometimes necessary, these placements are frequently far more expensive than planned not-for-profit provision. Research consistently shows that systems without anticipatory investment substitute planned expenditure with higher-cost reactive purchasing and that delayed service development creates a greater long-term fiscal burden. Put simply, when infrastructure is not built ahead of need, the State is compelled to purchase at the point of urgency. Urgency carries a premium.

It is within this context that our proposal must be understood. Including respite housing in the capital assistance scheme is not simply a service enhancement; it is also a strategic response to predictable demand. Respite is one of the most effective preventive supports in disability services. Evidence shows that planned respite reduces caregiver stress and delays transition to permanent residential care. When families are supported, the entire system stabilises.

A purpose-built respite centre can support up to 60 individuals annually through structured stays. For many families, this is what allows them to continue caring safely at home for significantly longer. Without respite, the pathway often accelerates toward full-time residential care. The financial implications are compelling. With annual residential costs typically around €200,000, delayed admission for just 20 individuals by five years represents an avoided cost in the region of €20 million. Meanwhile, the capital cost of such a facility is broadly comparable with building a small number of residential homes supporting only a fraction of that number permanently. Respite housing is therefore not merely supportive; it is also fiscally prudent, demand-moderating infrastructure.

Public systems are ultimately judged not by how they respond to crisis but by how effectively they anticipate it. We already possess the data and understand the trajectory of need. The question is whether our funding and housing structures will allow us to act on that knowledge. By expanding the capital assistance scheme to include respite housing, encouraging clearer separation of housing and care responsibilities, and sustaining the Government's current investment trajectory, the State has an opportunity to move decisively from reaction to foresight. Respite sustains families, extends independence, stabilises care pathways and protects public resources. Most importantly, it enables those we support to live fuller, safer and more autonomous lives within their communities, which must remain the central purpose of public policy.

I thank Mr. Hegarty. We will now move on to members, whom I invite to put their questions.

I welcome everyone and thank them for their submissions. Mr. Hegarty referred to respite housing. What does that look like?

It appears that certainly not enough adapted housing is included in new builds. In that regard, I have come across numerous cases of the necessary adaption of dwellings approved for persons with disabilities taking forever. In one case I came across, there was a delay of something like 12 months. It appears this happens because the local authority has to get funding approval from the Department for the adaption. That takes months on end, and the adaption itself takes time. Is that something that I alone have come across or is it widespread?

I came across a case recently where a blind person had to be admitted to a nursing home due to the lack of home care assistance.

Again, is that something the witnesses have come across and are there recommendations for how that might be dealt with?

Regarding the respite housing and what respite would look like, put simply, they are large bungalows - five- or six-bedroom bungalows - and people will come over a period. It is a flow through, so people might come for three to seven days. Generally speaking, when it is adult respite, they are elderly parents. This gives the caregivers time to recharge, take time for themselves and to steady themselves, because they know the road is long for people by the time they get a residential placement. You could have five people coming in a week and then a different crew coming in for the next week. There is a flow of people. Our main point is it offsets the requirement for permanent residential placements. The saving on that alone is significant, but CAS funding is not available for respite.

Would this respite house be staffed?

Absolutely. It would be staffed depending on the needs, but they would be staffed 24-7 by at least two people working there, generally speaking. It would depend on the need presentation of those who are there, but there would be 24-7 care for them.

The main point we in St. Joseph's are concerned about is the fact we cannot access CAS funding for respite houses. It is not available, but it is the same pot of money that is building houses on a long-term basis for people. An awful lot more houses will be needed if those people want permanent houses. The cost benefits are very clear.

Does that answer the Deputy's question?

Yes, it does. What about those relating to new builds and adaptations?

To add to the point on respite, it also gives the individual the opportunity to adapt towards a more independent future. It helps them to get ready for what is coming down the tracks. It is important to also note that is very useful.

On the housing piece, there is a big issue in relation to new builds. We need a change in part M of the building regulations to provide a percentage of housing that is wheelchair-liveable. At present, no matter how much of a push is put on building houses, people with disabilities are being left further behind because no housing is being built to any level of wheelchair-liveable housing. All houses are being built to wheelchair-visitable, which means you can get in the front door or into the sitting room, but you absolutely cannot live there. We can talk about housing all day, but unless we get a change within the building regulations, nothing is going to change for people with disabilities.

With refurbishment and the time it takes to refurbish, it seems so long because we have to abide by gov.ie and tendering rules. There is a timing on that as well. We cannot override ourselves. It has to go up on gov.ie.

I understand the tendering and that, but the time period involved is still simply too long. As I said, I have come across at least one case recently where it has taken something like 18 months for basic adaptations to be made. It is something that should be looked at.

I thank everybody for meeting with us and for the information they provided in advance.

For each of the groups, and then probably for Ms Carthy as the representative organisation, I note the 2022 and committee reports. In terms of interaction with the Department and the recommendations the witnesses would make about universal design and liveability as opposed to visiting and getting in the front door, the witnesses are the experts in the field. They are working with the individuals and the communities who need support.

What previous interaction and feedback have the witnesses had with the HSE and the Department regarding CAS and the percentage requirement in the building regulations? For us to move forward, if we need to repeat what has been said before, we absolutely will. However, to put it into perspective for us, what interactions have taken place, either collectively or in individual organisations, that were not repetitious? This is so we can say this has been flagged before. What is the progress and what is the timeline? That is one piece.

With NASS, I have to plead ignorance. We have heard previously there was very little data or there was no data. Now, I am hearing about the national ability supports system. Therefore, it should be possible to have enough data to produce forward planning and to be meeting needs, if not getting ahead of needs, and anticipating and planning. Would each group or whoever like to speak to those areas? I then have one piece relating to staffing, but I can hold that for later. I am conscious if we do not produce a report, we cannot move things along from this group.

I might answer the first question regarding engagement with the Departments of housing and health. We would bring a group individually but also collectively through the umbrella bodies and through the NDSA, the DFI and the federation. That is one avenue where we would escalate any concerns we have.

A wider concern for me is relates to housing and the capital assistance scheme, CAS, which both myself and my colleague Mr. Hegarty spoke about. I am coming at it from a different perspective to Mr. Hegarty. While I understand the requirement for changes to be made in a constrained housing environment, there were recent sweeping changes made without adequate consultation with specialist housing providers such as ourselves. Those changes were that we can no longer go out to the general market to purchase and adapt a property in the same way we could previously. We were clearly told that was to avoid excessive competition in the market, because, obviously, there were young couples seeking housing. Their belief was that it could be the housing associations that go out and build the H15 model. However, for specialist housing providers like ourselves which might engage with individual local authorities, that is incredibly restrictive, not practical and not within the funding envelope available to us. There are different things here. There is engagement with the Department of housing as a housing association but also as a specialist provider, which is what our housing association is.

As regards NASS, my understanding is the data on the system is clean. The HSE did a lot of work on it maybe three years ago. By the first week in December each year, we have to put our information into that for everybody we support. So members are aware, NASS is like a census for those we support. It asks very detailed questions as regards their needs, their home care, who is in their lives and their circles of support. Everything is predictable at this point. We often hear of children turning 18 and services not being there for them at times. They did not come out of the blue. My understanding is the data is there and is very clear.

If I can follow on from that for Mr. O'Sullivan and Ms Darrer with Enable Ireland, in respect of CDNTs and that area, presumably they are feeding in that data from the early years from the first engagement with families or post the public health nurse and the developmental checks. Information is going in from that birth to three years old age group. It should be there from nearly birth onwards, and yet we do not have forward planning for each stage.

There is lots of data there within NASS.

Also, the Housing Agency has its own data hub, which gives rich information on the level of housing need for people with disabilities. A quick look last late night told me that, in 2024, there were 4,348 people with a disability in need of housing. It breaks it down by type of need for the disability, etc. There is lots of data in the system to help us to plan.

On the planning side of it, there are lots of people with disabilities who do not avail of services so the data would not be there for them. In the census, we do not have a figure for the number of people who are wheelchair users. Within the housing list, there is not any real data. While they have changed the application form and there is now a tick box in that, we do not have any work done for previous years on what that figure looks like for wheelchair users so there is no planning there. We would go back to the point that there needs to be that level of planning. We need to have houses that are suitable for people on the list, but also for people who are looking to buy or rent privately. People cannot avail of housing assistance payment, HAP, because there are no accessible houses out there. It has to be part of the overall housing market that there is wheelchair-accessible housing. We would look at 7.5% to 10% of houses to be built to wheelchair-liveable standard.

I thank the witnesses.

I welcome all the witnesses here this morning and thank them for the work they do. They definitely make a difference to a lot of people's lives and I say "Thank you" for that. I will start with Ms Carthy or Ms McGettrick of the NDSA. Ms Carthy said that accessible housing must be "community-connected". How does she envisage, going forward, that this would be made part of planning with regard to, for example, transport or employment? If people are planning building houses, how can you integrate?

We have to think of disability when we are thinking of everything else. When any housing estate is being built, you have to look at the opportunities for the general public. You have to put disability into that space as well. We would certainly recommend that houses are pepper-potted throughout a community so that people can live connected to their neighbours and peers and be able to get up in the morning and get out, go to education or employment, and go and visit their friends, their neighbours, etc. When you are designing anywhere, you have to design housing estates with these things in mind. You really need to put the accessibility planning in from day one.

I thank Ms Carthy. My question for St. Joseph's Foundation is for Mr. Hegarty or Mr. Doyle. I am familiar with their work. I work closely with Councillor Ian Doyle and the Minister of State, Deputy Michael Moynihan, and they really sing their praises. I would just like to say that. Could they expand on respite? I am a huge believer in respite. I worked in a former life with adults with intellectual disabilities and I know that a week or, sometimes, a night in the year makes such a difference to families, gives them a great break and indirectly saves the State a fortune because their batteries are charged up. The clients love the break as well so it is a win-win. I would appreciate it if Mr. Hegarty or Mr. Doyle could expand on how to get the right number, for example, of respite houses but yet houses for people with disabilities. They might expand on that.

It is very difficult to get it right. That is the honest answer.

Both are so important, are they not?

Yes. It is really important. As I said earlier, respite gives the families a break. It allows them to recharge. It also allows the person to have a sense of independence away from mum and dad. They are adults and, like other adults, they should have an opportunity to experience things outside of the family home. Therefore, it is really important. There is a balance. The balance comes into it in terms of the need of the individual and the need of the parents. Where is the right balance? As the Senator said, some people are getting one day a year. That is certainly not good enough for anybody. There are other families who certainly would need a lot more, possibly two or three days a week in some cases.

In essence, it is kicking off the inevitable. The inevitable is the requirement for permanent residential placements for people. There is a fine line with it. We depend quite a lot on our social workers within our services to tell us who is struggling. It is those who are struggling who will get the supports.

A lot of services provide traditional respite - the committee members will all be aware of the house where people will go - but other providers, like ourselves, also provide a alternative respite. Rather than having your respite centre, we will take people away. We will take them away for a weekend break somewhere with a peer group that they would work well with just to be able to allow that pressure release valve for the family and for that individual to be blown for that period so that they can get back on track.

I thank Mr. Hegarty. The Rehab Group is represented by Ms Fogarty and Ms Goranson. Staffing shortages and pay disparities obviously threaten the whole service. Can they talk about that and what steps could be taken for recruitment and retention, which, obviously, is a huge problem?

It is a very significant sectoral problem. I understand from my colleagues in section 38 organisations and in the HSE that they experience significant challenges. However, for ourselves, in a section 39 organisation, there is a pay disparity.

The WRC payment implementation plan was very well received from the Government and from our staff equally. However, when you have people working in a service and people working in a similar service down the road who are getting paid more, it still remains very challenging. There is still a gap that needs to be bridged between section 38 organisations, the HSE and section 39 organisations. It is an inappropriate gap.

I will highlight to the committee that we have evidence of people who do not want to leave the organisation and love working for the organisation but in the context of a cost-of-living crisis, people are leaving and changing jobs for maybe an additional €20 a week. We have evidence of that. That is very significant after you have trained people for a period of time and have invested in them, and they have built up a relationship with those they support. That is very challenging.

We would have looked at everything from college student placement to engaging international recruitment campaigns on two occasions to bring in people from other countries who would have the relevant qualifications to work alongside their colleagues. We consider that we provide a very extensive training package for people. We also look to provide progression pathways. Internally, as an organisation, we have other divisions which sometimes will enable people to move across or to work in a different area of the business. We have staff initiatives and recognition awards. I would consider that we have explored everything.

The other thing to consider is the impact that Covid had overall on healthcare. It had a very significant impact.

Unfortunately, sometimes the sector is viewed negatively as well. There is not the opportunity for people to get to see the change, the impact and the difference you can make to people's lives. We constantly hear about the negative things in the media without hearing necessarily about the positives. We go over and above internally to ensure people are aware of all of the positive initiatives that we, as an organisation, provide for people.

I thank Ms Fogarty.

I want to declare a conflict of interest at the outset. Rehab provides some of the care supports for my adult son. I echo what others have said: notwithstanding the crisis we are in, the people who come into our home - they are from Nigeria, Korea, India and all over the world - are without exception the most wonderful people. I worry sometimes about the nature of the interactions between my adult child and the people who provide care when I am not there, or when I am gone. I have to say they are really wonderful people.

I have a quick question.

Ms Darrer mentioned 4,348 disabled persons on the waiting list. Is that nationwide or just in one area?

That is the national figure. It is on the data hub.

Okay. To echo one of the questions my colleague asked about one of his constituents who is blind and finds himself in a nursing home, my understanding is there are about 2,000 adults inappropriately placed in nursing homes in the general Dublin area alone. Is there any figure for that nationally? Do we have a handle on how many disabled citizens-----

The HSE has a tracker. I do not have access to it so I cannot give the figure to the Senator. There is a tracker of those inappropriately placed in nursing homes who are under 65.

Okay. On the question of respite, in 24 years, I have never had any respite - not one day. I would not even know how to begin going about looking for that. How do older parents seek out respite? How does that work?

The first point of contact would be the disability case manager within the HSE, who will then make contact with the respective agencies in the area that provide respite. They will ask various questions about the type of respite a person is looking for, such as residential like Mr. Hegarty referred to or it might be alternative respite like after-day services or for children after-school or weekend-based respite. They will do an assessment based on the individual's needs, what activities they like to engage in and for want of a better description, they will offset it against availability locally.

Sure.

They will then engage directly with the providers. There may be a number of providers. There may be one. There may be none, which is a very real situation in some locations.

This question is probably best directed at Ms Carthy. There is such a patchwork of housing provision for disabled citizens. I know the great work Ms Carthy does. I heard some solutions there I would love to avail of. In the Government's response to the housing crisis, something like 30,000 units were built last year. I believe a portion of those is set aside for disabled citizens. I cannot recall the section title. In Ms Fogarty's experience, are they coming on stream for disabled citizens? The higher threshold for disabled citizens to get a housing allocation was talked about. Is there an uptick or improvement in the provision of accessible social housing for disabled citizens?

We are not seeing it. Different local authority areas are different. Some are a little better than others. We are not seeing that across-the-board change in the number of houses that are being built. A lot of them are bespoke-built, where they might look at somebody on the housing list and what they might need. That kind of seems like a good idea but it means everybody else is left waiting for years. We have people who have been on the waiting list for accessible housing for ten years.

We are also hearing that people who need wheelchair accessible houses are being sent to houses that are not accessible. They might be able to get in the front door or whatever but if they refuse that, they are told that is your first refusal of a house and that if you refuse again, you will be put to the end of the list. They are refusing because of the fact that house is so unsuitable on all sorts of levels for them. We are not seeing it across the board and I do not think we ever will unless we see - I keep harping on and going back to Part M of the building regulations - those houses being built right across the board. Until that, we will not see any sort of change in those figures.

To echo Ms Carthy's point about the UNCRPD, it is only when there is a legally enforceable right that we will actually see a response. I congratulate Ms Carthy on her successful transition to independent living. One of the things that really struck me was she was on to the housing allocation officer every two weeks to remind them. Even in the response on respite, it is up to families to knock constantly. I welcome all of our guests and congratulate them again. Unfortunately, I have to go so please forgive me for that.

It is very important for the committee to hear the voice of people who acquire disability. They are essentially locked out of social housing provision. Typically, if you have a stroke or you acquire Parkinson's disease and you cannot return to your own home, you are locked out of the social housing system because you have a mortgage and an income so you do not qualify for social housing. There is this minority group within the wider disability community who are really left out in the cold. We have talked about it but typically they are the people who are silently placed in nursing homes.

That is the thing. We will all become disabled. The World Health Organization says all of us - every single person - for on average, eight years of our lifetime. I know of one person who came off his bicycle on the way into work. He worked in the corporate finance sector and he acquired a brain injury. He lost his capacity to earn a living. His marriage broke up and he is now homeless. I mean homeless as in he is in crisis on the street. The broader public generally does not understand the impact of disability. It is not the actual disability itself. It is all of the other obstacles put in people's path and the fact they have to fight so hard for the bare minimum. I thank all of the witnesses for all of the work they do for all.

Cuirim fáilte roimh na finnéithe. Apologies for being late but I was on the radio bringing up the issue of the lack of a cost of disability payment at the minute. I think that is an acceptable excuse. I obviously commended the IWA and other organisations on driving that issue forward.

We have dealt with a number of these issues. In fairness, Mr. Hegarty spoke of how this State only deals in reactive disability housing. Therefore, the only people ready to step into the breach are the for-profit operators. Everything will cost more and the long-term will cost more. I will ask him in a second if he can put any figures on that. It is an abject failure. This came up last week as well. I will be honest that it was something I was aware of. I went into the health committee afterwards and asked the question of Bernard Gloster. There was an acceptance that is the issue but as per normal, things are changing.

He also spoke about the fact the preference was that in the long term, local authorities would provide the housing. How will the witnesses' organisations be able to deal with that as regards the local authorities being the owner and the organisations being the tenant? Obviously, the local authorities would not have the capacity to offer what is needed and the organisations would need to be involved in the design and so on. When the first issue came up around the capital assistance scheme, CAS, that came to me, I received answers from the Department of housing and the Minister. Toilet roll is probably what could you categorise them as. Formerly, you would have gone to a local authority and had a conversation about a house. It might even have been a rental house that was about to be sold. You would purchase it. There were three or four of these between Louth and Meath at the time.

All of a sudden, that CAS funding was thrown into the secondary acquisition pot, such as tenant in situ and disability housing directly by the council, which was no longer able to facilitate you in the other way. The local authority still buys it so I do not buy the argument that it impacts the market because local authorities are still buying these sort of houses for themselves. In some cases, I am very glad to see it. Could I get the figures about the added costs due to the fact the State has only dealt with reactive care? What would a situation look like where the local authority was the lead and the witnesses' organisations or other organisations, such as Rehab, operated as tenants?

A total of 85% of the capacity growth within placements for people with disabilities in this country over the past three years was among for-profit organisations. There are a couple of avenues that are leading down that way. First, they can respond far more quickly than we can. Most of our organisations cannot take out mortgages or loans to build. We have to acquire properties from the council or via capital funding from the HSE. Second, most of the emergency placements that go through are coming out of the hospitals. Someone might be in a situation whereby they go into hospital and cannot go back.

Some people are at the end of their tether and they literally leave their loved one in an emergency room because they cannot cope anymore.

Yes, carer burnout. As the Deputy can imagine, hospital spaces are very limited and there is a push to get them out quickly. As the Deputy knows, if someone buys something quickly, no matter what it is, such as a car, they are going to pay a premium price for it. That is what happening. We know placements are costing twice and sometimes three times the price compared with placements in the voluntary, not-for-profit organisations.

I know it is difficult and every case is different but what is the average cost the witnesses’ organisations provide versus that of for-profit organisations?

Our average placement is approximately €185,000 for someone in a residential placement with us.

Per year?

Yes.

Mr. Hegarty is saying to basically double that.

Yes, double it, and the rest of it.

It could be even close to €400,000.

Yes.

The agency has published information stating that section 39 organisations have an average cost of around €240,000 to €260,000. Section 38 organisations and private organisations - mainly the private ones - are in the range of €400,000 to €500,000.

I think that answers my question.

Those are their statistics. They are not ours.

It is important to acknowledge that the private services are recouping their capital outlay through that fee. We are not comparing like with like. As Mr. Hegarty said, capital is an issue for us.

It is still costing more.

Arguably. I cannot tell the Deputy what the profit line is, however. I am sure there is one.

They would not be much of a for-profit outfit if there were not.

Yes. From our perspective, if we had some leverage to even be funded to take out mortgages, we could go ahead and do that but it is-----

I accept that. That is what I was getting at when I asked the question. The State is saying that its preference is for the State and local authorities to buy houses. It is all well and good for that to be the preference, but you actually have to do it. How would the witnesses’ organisations be able to operate within that? Is that a scenario in which they could operate as tenants? I assume it would remove a fair amount of the administration issues.

I will say two things. First, from a residential point of view, the tenant would be the resident, not us. We would be the service provider that delivers the service.

The local authority would not be able to provide that bespoke-----

Yes. In Jane Fennessy's case, Cheshire Ireland is her landlord and she is the resident. We are the third-party provider. We have examples of working with the HSE where the HSE has purchased a property and then we have gone in and run a respite service on its behalf. That has worked very well. We have no trouble with that at all.

We have to do a piece of work on that cost, Chair. We need something stated explicitly to drive home the point.

Like Mr. O’Sullivan said, even though we have our own housing association, we have a number of situations where we have worked with the local authority. In those cases, they are the landlord and we have people living as tenants in local authority housing. It can and does work, but it is limited.

Of course it is. It would be a matter of them delivering. We could have a whole conversation on housing. We know the issue that exists. It is nothing but failure at the minute. Am I going to give the witnesses seven seconds to respond? No, I am sure the Chair will allow me that flexibility later. I have to go speak elsewhere.

The Deputy can come back in later.

That is very decent of the Chair.

I welcome all our witnesses and guests here today. Last week, we heard from representatives from Horizons, the Muiríosa Foundation and Stewarts Care. I will ask a similar question of the witnesses to what I asked them. It is striking to me, looking at the overall picture of disability service provision across the country, that we have a remarkable patchwork of services. We have numerous voluntary providers. Even within Cork, we have many voluntary providers operating in slightly different ways in different geographical areas. It seems that it often reflects more historical accident and tradition rather than any coherent, strategic design. The geographical remits of the services do not necessarily align with the HSE’s health regions or integrated healthcare areas. Given that level of variation, is it not time to consider a single strategic national plan under one authority, similar to what A Vision for Change attempted to do in the area of mental health in 2006 with clear, population-based staffing and resource benchmarks to be delivered through the HSE? That is a question I wish to put to the witnesses, although I appreciate it is complex.

When I raised this last week, some organisations, understandably, expressed concern about that kind of proposal. I very much recognise that because we all know there is a great deal of innovation and creativity in the Muiríosa Foundation, Horizons and Stewarts Care, as well as within the witnesses’ organisations, no doubt. That has grown precisely because of their independence and local development. There is a real risk that if all voluntary providers were subsumed into the HSE, we could end up having that levelling-down effect, losing innovation and creativity and potentially repeating mistakes that we had under schemes such as the progressing disabilities scheme, where consistency was sometimes achieved at the expense of adequacy and it became a race to the bottom, to some degree.

Whoever takes on responsibility for disability in the next Government - my party very much aspires to do so, with a dedicated senior Ministry solely for disability - that person is going to face an enormous task of reforming, integrating and making fairer what is currently a maze of services. That reform has to deliver coherence and equity without extinguishing excellence, innovation and creativity. I am interested to hear the witnesses’ views on how that balance could be struck. How do we achieve equity while respecting the individuality of services?

To go back to the history of it, voluntary provision has evolved over the past 100 years in areas where there were gaps in the State’s services. Often, families came together to put a service together, and that grew into organisations. With the evolution of the health boards and then the HSE, they accepted the organisations' provision as part of their overall provision.

In the context of catchments, one of the difficulties I have is that the catchments are with the HSE in the integrated healthcare areas. That is where the catchments will be and they will guide the organisations. We will work in partnership with the HSE in that regard. I do not feel there is a mismatch. Once there is a quantum of provision across the whole sector, the HSE can then allocate from the resources within the integrated healthcare area.

In respect of point the Deputy makes about the innovation and experience our colleagues who were before the committee last week bring, I would argue the same. That is something we have learned over the years. One of the reasons we are still here is that the HSE recognised that we do it better than it does at this point. That being said, hand on heart, should the day arrive when the HSE could deliver better outcomes for the people whom we serve than we can, we would step away. We would not be needed any more. Heretofore, however, we have been needed. We know we have value to the HSE and that is communicated to us. Through our innovation and agility of response, we are able to deliver good outcomes for people.

We have it already. In 2004, the then Minister, Mary Harney, appointed the HSE as the primary care provider in this country, and we all work, either as a section 38 or section 39 organisation, for it. I ask the Deputy whether it is working. Without us and without changes, it would not work at this present time. I ask the question back to the Deputy as a local representative meeting people on the ground - does he think it is working?

From the point of service users, the disability sector is in crisis, and that is not to blame the witnesses' organisations at all. There is a remarkable degree of fragmentation and disjointedness of services that needs to be addressed. I have huge concern about the growth of private, for-profit operators within all of that and how that is taking away funding from the witnesses’ organisations. It involves service planning that is based on reactivity as opposed to long-term planning. The key question is whether it is working for disabled people and their families, and I really do not think it is. That is not to take away from excellent work that is happening in areas, but in an overall sense, the sector is in deep trouble.

The primary service provider at this point in time is the HSE.

I thank Deputy Quaide. I do think a vibrant community and voluntary sector is an essential part of Irish society and of a vibrant democracy. We are much more than service providers. We are advocates, we are innovative, we are agile and we look for new funding opportunities in response to peoples' needs. We are much more than a service provider and are beyond mere agents of the State in that respect.

In 2019, an independent review group chaired by Catherine Day published its report about the relationship between the State and the voluntary sector. It proposed substantial reform of the relationship between the State and the sector, including a reset to the funding model. That report really illuminated the issues we, as disability sector organisations, face. It is well worth this committee thinking about how, regardless of the model, we need a reset. We need to change the relationship between the State and the sector and we need to reset around the funding model. The blueprint is there in Catherine Day's report.

Further to the points that my colleague made, Rehab Group as an organisation has a very proud history of over 75 years. However, it needs to be recognised that although we are separate organisations we do work very closely together under the umbrella bodies. There are a number of umbrella bodies that cover all aspects of all of the services we provide. We share innovation. There are situations where we recognise that one organisation may do things better than another and we work very cohesively in that regard, in some areas more than others. However, if we think back to the Covid-19 pandemic and the success with disability services, it was recognised how well the community and voluntary sector did for the people we support during that time. That was because of they way that we come together and support one another and work in the best interest of the individuals at all times. I do agree that a vibrant community and voluntary sector that works together in the interest of the individuals we support and the sector we work in is crucial.

I thank all the witnesses for being here today and the work that they do. We also welcome those in the Gallery. I was in my office listening to the opening statements so I am well briefed.

I want to start by talking about pathways. Most of the witnesses mentioned ageing parents caring for children with disabilities or other challenges. I had a parent in my office this week who is ageing and about to retire. He came in to talk to me about trying to get transport for his daughter to get to the day service. His daughter is 30 years old but he is so far away from looking at independent living or support for her. They are still caring for that daughter as if she was 16 or 17 years old and nobody has spoken to them about a pathway for her to get towards independent living or the fact that she has a right to social housing. There is a huge gap there for parents. I also felt, especially when I canvassed in rural areas before the local and general elections, that there are parents who have the mindset that it is their child and their responsibility. Despite the fact that they are in their 80s and are living with their 60-year-old child, they have never considered that they should be supported. There is a huge gap there in terms of knowledge for those parents.

I will start with Mr. Hegarty because he made a positive point in his opening statement, acknowledging the increased co-ordination of the all-of-government response. All the witnesses have mentioned the need for the HSE and local authorities to work together. Are they seeing that all-of-government response filter down? What kind of policy changes are needed to get the HSE and local authorities working together and expanding in order that parents on the ground will get that knowledge for the pathways?

I do think the all-of-government approach is filtering down. The engagement that we have from different Departments through our umbrella bodies has never been more active, with the information-gathering, how it is solution-focused and by asking organisations like ours, our colleagues here and the umbrella bodies how they go about that. Before, it was always just the Department of Health but now it is coming from the Departments of education and housing, among others, to see what we can do. There is a push there. We saw that with the budgetary allocation last year which was the biggest ever for our sector. We can see that there is a lot of money going towards sustainability. We know the sustainability of many of the section 38 and 39 organisations has been of concern. We know there is funding going towards that which puts us on a good footing so we can actually focus on the future of the organisations as opposed to the here and now. I do think it is filtering down and we look forward to it.

I have an opinion about responsibility for disability moving to the Department of Children, Disability and Equality. I believe the funding for disability should have moved to that Department. The funding sticks within the Department of Health and is allocated through the HSE. There is a bit of a disconnect there. Those making the decisions should be responsible for delivering the solutions but at the moment that is not the case.

In respect of the pathways and co-ordination-----

Just to confirm, the funding has transferred and we will be looking at the funding.

Mr. Hegarty gave a very good example of Limerick local authority working really well. That links in with Jane Fennessy's story, as outlined in the Enable Ireland submission. She is resident in Bailis living service. However, then there was the example of Cork having only one house available. I am thinking of my own local authority in Mayo where I know there are two gentlemen together who are under a service trying to acquire a social house in Achill. They are trying to put the pieces together. Another lady, Geraldine Lavelle, had an acquired injury and was in a nursing home in Sligo. She got her house but did not have the HSE hours. It is all so uncoordinated. Why is it so piecemeal from one local authority to the other and, again, what policy is needed to streamline that? Perhaps other witnesses have an opinion on that as well.

Limerick is just unusual in that they ring us and ask what our needs are. It is an amazing system and most of the houses that we have through the capital assistance scheme come from Limerick, even though we are Cork county.

Is that coming from a human in Limerick who is good-natured and proactive, or is it a policy?

I think it is.

How can we replicate that in a policy? What would be needed?

The whole structure within the local authority feeds into that. For example, the local authority may have a social worker for housing who will engage proactively with the providers, which is our experience. Colleagues in St. Joseph's Foundation have spoken about Limerick and they are correct, but there are other local authorities where that works really well. Where the structure within the local authority is conducive to engagement with providers like us and there are developments coming on stream with a proportion of disability-specific housing, they will know who the providers are that have waiting lists and that have people who require that. That engagement at the first stage is crucial. It means the whole process is seamless. That is our experience.

Regarding the pathways, Deputy Keogh spoke about the example of ageing parents. We have that across the board in our organisation as well, where we have people in respite whose parents are in their 60s, 70s or 80s. If those needs are not escalated early then there is the risk of talking to people about something that is not going to exist in the short or medium term. We have to look at what the needs are at the earliest possible stage and bring families and parents on that journey. That is what critical for us. We ask people whether they have thought about the future and what it looks like for their family and their loved one. The earliest possible point we can engage people in that process is usually what determines how successful that will be.

In terms of a person to take that approach, is that a social worker within the housing department of a local authority? There are families that might be engaged in a day service but there is not a huge amount of communication; it is just a drop-off and pick-up service and they are not engaged with more services.

There are families all over the country on waiting lists but there are also families who are not on waiting lists for respite or social housing because they do not even know it is an option. Where is that co-ordinated response to come from? Is it the local authority or the HSE?

It should be the HSE. The local authority is primarily just for housing issues. If it is any other area of care, for example, home support or respite within a day service, it should be the HSE. The disability case manager in the HSE should be aware because they are the first point of contact. Whether it is day service or children's service, they are the first point of contact. They then refer on to the providers. They will know the background and the family situation and circumstances. They should be aware if respite is an additional requirement and the referral should go in for that. They should be aware. If somebody's first point of contact is day service and they are 16, 17 or 18, they will be aware of the ageing profile of the parents or the family situation. At that point, the planning should commence as to what the future care needs will look like. Unfortunately, demand exceeds supply. Sometimes if a situation is stable up to a point, that person gets pushed to the back of the list and then it becomes a crisis.

As a TD for Limerick I want to echo the comments about Limerick City and County Council. The housing department can be very progressive on some issues. I deal with the housing department probably every single day. I deal with it all the time. Next is Senator Harmon, who has seven minutes.

I thank all of the witnesses here this morning. It is one of the most informative discussions we have had in the committee. I was listening earlier online. I thank those in the Gallery, including Jane Fennessy, for being here today. As for where does one start, there is so much that needs to be done to improve independent living for disabled people. A council in Cork was mentioned. Was it Cork City Council or Cork County Council? I am told it was the county council. It will only accept one disability house per year for the collective providers. That is testament that needs are going unmet. Recently, I had the honour of meeting campaigner Joanne O'Riordan in Cork who has done a lot of work on this area. A key thing is the lack of joined-up approach between the councils and the HSE. The need for care and the need for housing should not cancel each other out or immobilise each other. This is a clear issue that needs to be resolved. Disabled people are often assessed as single-person households but if they have consistent care needs, the reality is that person is living in. Is that an issue the witnesses have come across? Ms Fogarty mentioned Rehab can no longer access funding from the capital assistance scheme to adapt existing housing. Will she elaborate on the impact of that on people and what needs to change? Does it need to go back to how it was? What needs to happen? Ms Carthy mentioned the need to look at Part M of the housing regulations to make sure they are wheelchair accessible. She mentioned I think between 7.5% and 10% should be the amount allocated. What needs to happen? It is a legislative ask that we can bring forward? Is there a concrete thing in legislation that can be done in that regard? I hear what the witnesses are saying about ageing parents, early-stage needs needing to be identified, the fact that you cannot just put somebody in appropriate housing in the middle of the country if it is not going to contribute to independent living and the need for capital assistance funding to include respite. I would appreciate responses to those questions.

In relation to the issue I raised about the capital assistance scheme, previously, if we had a need for housing for an individual or a number of individuals, we could go out to the market, find a suitable property that could be adapted and go through the purchase process through CAS with the local authority for that. That is no longer the case. It is the H15 model, the new build model or local authority housing only. That is restrictive in terms of waiting lists. Adaptation costs were built into the CAS application. You would say purchase costs were X and adaptation was Y and this is the total amount we need. That was done in consultation with the local authority and they would approve it or come back for further information. Within that, there was no provision for life cycle, changing needs or anything like that. You had to go back with a separate application for that. If somebody's needs changed over time, which they do every day in our services, there was no provision for life cycle funding within that.

On the point about the lack of a joined-up approach, I agree. We go through cost-of-living options with our service owners through their person-centred planning process in which we look at their accommodation needs for now and in the future. It only gets you so far. We have had examples where some of our service owners have successfully got a house allocated but the house is in urgent need of adaptation in order for them to occupy it and the funding for that has not come through. Now, that person is incurring rent on the property but cannot access it. That is one example.

On Part M of the building regulations, it is a legislative ask. The English model has a three-tiered system - universal design, universal design plus and then universal design plus plus. That looks at the different needs. We really should have universal design - the Government talks about us having it - to make sure people can stay in their homes and age in their homes. A percentage of those homes should be universal design plus. What happens in England is quite a good system. We could work towards that. There is another hold-up where a cost-benefit analysis has been going on for probably six or seven years and it still has not come up with the result. Standards are also being worked on. While we have been talking about Part M for building regulations for six or seven years and trying to get a shift within Government to look seriously at it, so many houses have been built in that space of time that are not suitable for people with disabilities that they have been left behind. That legislative ask really needs to be pushed hard.

In teasing out the policy response and how we might become more joined up in our approach, there is the carrot and the stick, there is the national and the local and multiple layers of complexity. A dedicated resource is needed to enable that function to be much more effective and impactful for the individual and the agencies working in that area. That goes back to some sort of policy response that looks at leadership and accountability. It would be great if the committee made a recommendation around that and at least a dialogue could be opened as to how we problem solve around that nationally and locally and involve the relevant agencies. That would help us to figure that out.

Ms Carthy mentioned re-enablement. Will she explain what re-enablement is as distinct from rehabilitation? For the other groups, what is the role and importance of personal assistance? How does it work in each of the organisations when preparing individual plans? This is linked to the community and place-making piece, moving on from home-making to community integration. When Ms Carthy mentioned re-enablement, I must plead ignorance as I had not heard that phrase.

It is closely linked to rehabilitation and to looking at people who are losing their skills because the ongoing services are not there. What we are trying to do, and what we end up doing, is reabling people to bring back those skills. I suppose it is rehabilitation, but it is bringing somebody back to their starting point.

Perhaps it was because services had either diminished or were not there post hospital discharge after an acquired injury.

Yes, exactly. The reablement piece is very much clinically led and is about supporting the person. There is a prevention element and there is the reabling element, supporting the person to get back to where they were and the prevention of further frailty. That is really vital. It is a clinically led and, most likely, interdisciplinary process.

With regard to the community integration and sourcing work, there is a fantastic Rehab facility near where I live in Ratoath, County Meath. We put out a call through our business WhatsApp group to see if anybody would consider it. We now have one or two young men working in a local convenience store and a young lady is working in one of the local hair salons. Perhaps we can expand on that. Do the witnesses have any comments on place-making, community integration and moving away from - in the complete sense of the word - decongregation?

I will speak to decongregation first. Our experience with that is outlined in our opening statement and in some of the additional comments that were provided to the committee. The decongregation project in Kerry has been transformative for the people who lived in the institution involved. Some of them lived there for 30, 40 or 50 years. They are now active members of their communities. Some of them have jobs. They are living in community houses with people they chose to live with. I can share examples of some of their stories with the committee.

Four young men moved into one community. It was the first time they had ever had access to their own kitchen, even down to drinking water. Their water used to be provided to them in jugs at specific times during the day. From having access to a kitchen, never mind the impact of teaching skills relating to cooking, and being able to go out at times that suited them - some of them are now working - it has been transformative. The Rehab Group is very lucky. We have a training and education division and a division that looks after employment for people with disabilities. All of our divisions work seamlessly together to try to ensure access to employment, training and education for the individuals who use our services. We have partnerships with Mr. Price. We entered into one recently with Woodie's whereby we work to ensure work experience opportunities for people. We work actively in the space of integration and decongregation.

I thank the witnesses.

From Enable Ireland's point of view, the community integration in Bailis in Meath is a good example of what can be achieved and what is possible. Like everyone else, I again acknowledge Limerick City and County Council. The council has reached out to us regarding a number of our service owners. We are looking at a similar project down there now that I hope will come about.

With regard to employment, we have often leveraged the relationships we have through our retail and fundraising sectors for opportunities within those areas in line with the needs and wishes of the service owners. Some of their wishes can be purely around community focus, therapeutic models and so on.

I apologise that I was not here earlier. I was speaking in the Seanad. I have read the opening statements. I come from Limerick. There are smaller residential settings in Limerick city centre. Is there a good working relationship with the local authority? Is it they supportive of the organisations the witnesses represent? Are there any policy changes that should be looked at in order to give people with disabilities in residential settings a better quality of life and maybe access to supported living? Is there anything that the witnesses feel should be highlighted or that the Government should be looking to change?

We have spoken extensively about the relationship and the engagement with Limerick City and County Council. The experience has been is incredibly positive. The council is very supportive. It is the structures within the city council that enable this. It has very positive engagement, and not just with us but with our colleagues also.

On supported living, we have a really good model in Limerick city that was developed in conjunction with the council a number of years ago. That project specifically provides multiple opportunities for people with disabilities to live independently and transition from community housing to independent living. It has also enabled people to move from more rural settings into the city centre and to access all that this community has to offer. That has been hugely successful, and has been recognised. Successive Ministers for disability were looking at that model of service. There is a cost benefit to that whereby having support staff on site can help to meet the needs of multiple people. It is not about having residential services in rural locations where a team is dedicated just to the needs of those individuals. A community like the one in Limerick city that we developed in conjunction with the local authority can meet multiple needs. It has been a positive experience for all of those who live there. It means that at various times in their lives when their needs change we can step up the supports or we can step them down. It is a model that we would love to be able to replicate elsewhere.

On the policy question, I would advocate for a multi-annual approach that would allow for better planning between housing and the HSE. It would allow for better planning and better co-ordination. The figures are there. Between the capacity review and the national ability supports system that we talked about earlier, there is a good idea of what the needs are but we need a co-ordinated plan. Over a number of years, this would eliminate those scenarios whereby, as described earlier, the person arrives at a house but he or she has no package to meet his or her needs. If we could look four or five years down the road it would also be a way of breaking from that cycle of reactiveness. We might have to carry that reactive element of it for a year or two until they can stand on their own two feet again There is a need for us to get back to where we were 20 years ago, when we knew what we needed to do and when we needed to do it. We worked with families, organisations and the HSE. Obviously, we had a crisis. That crisis has led us into what we call the emergency funding model. The only way to get out of it is to break the cycle.

Is Mr. O'Sullivan talking about the short, medium term and long term in that regard and about the organisations knowing that they had consistency of funding?

It would be a sort of ongoing cycle. If we want to develop a housing solution for somebody, it is not instantaneous. We need to be able to plan ahead. That would probably have a rotating multi-year element to it.

On support services for older people, as they get older, some individuals probably require more support or more services. Do the witnesses have any thoughts on that?

Services are able to recognise changing needs and work with the funders to, maybe, increase funding in certain areas. In some areas we step in where we can or we might have to adapt the model we have to meet the needs of the person and the changes that are going on.

On ageing, once people with disabilities hit the age of 65, their disability disappears, apparently, when it comes to funding because we go straight into the older person's funding. This means that a lot of their personal assistance services will be reduced because the funding is not the same. The money goes into care packages rather than personal assistance, and that is a huge struggle for people with disabilities when they turn 65.

I echo what Ms Carthy said. Many people who are over the age of 65 and who, perhaps, acquire a disability cannot get access to disability services, rehabilitative services or reablement services, so they typically fall out of the 18 to 65 cohort. That is highly discriminatory and inequitable. Age should not be a barrier to accessing services.

I had a case recently involving a person who is over 65 and who needed to go to Rehab. Because they were over 65, it was almost impossible to get them to the relevant location. That is terrible. I agree with Ms McGettrick in relation to age barriers, regardless of what age you are. You can have a fit 70-year-old or 80-year-old who can live on at home if they get the right supports. They are pushing an open door. I thank Ms McGettrick for highlighting that.

To continue on from before, I often talk about needs analysis. However, not much needs analysis is required in this regard. Between 80 and 90 people fell into reactive housing care last year. If we plan for anywhere between 100 and 150 planned - we can provide for that in whatever is the best way - the witnesses are willing to work alongside local authorities. As already stated, we need to highlight the fact that regardless of how good the care being provided is, the failure to plan and the added costs involved are abjectly criminal. People would have a huge issue with that. We all know if this money was set aside and used for disability services, there is no shortage of places where it could be spent.

As the witnesses outlined, we do not have a holistic system or a proper framework. We have pilot schemes, we are looking at personalised budgets and we have issues whereby people either can or cannot access home care. Then we have the issue in relation to adaptation grants. I remember a case that was resolved, but with great difficulty, involving a child who got older. There with issues with winches, supports and whatever. The family was financially impacted by having to look after the child, which they were willing to do. As much as they had been approved by Louth County Council for an adaptation grant, the money involved would not cut the mustard. There was a means of delivering HSE funding, but there should be a route map in that regard. I get that it is not possible to put in place a bespoke arrangement for every individual. However, we can provide something a lot better in order to people to be all they can be.

Let us take the example of a couple who bought an affordable house under the tenant incremental purchase scheme. If they then have a child with a disability, they are going to need a different sort of house. They cannot adapt the house they are in. If they sell it, they will lose financially, particularly in the context of the clawback. Therefore, they cannot get the house that their child needs. It is not about them, it is about the child. Have any of the witnesses come across cases like that? In an awful lot of these cases, even with all the deficiencies in local authorities, you would at times be a lot happier if those involved were local authority tenants because at least there would be some means of finding a solution.

In relation to the small amount of money that is needed to support people to stay at home and care for their parents, the difference between that and the cost of a residential placement is-----

It is phenomenal.

It is common sense. Common sense needs to prevail when we come to supporting people, particularly parents as they are ageing. In the context of teenagers, as they grow and as challenges arise for their parents and siblings, it is obvious that those supports should be given.

In the context of what Mr. O'Sullivan said earlier with regard to multi-annual planning, we need to get back into that space. We know who is coming down the tracks. We know the people we support better than anybody. We know them better than any system or public servant. We know, for example, that over the next year or so a particular person is going to need a little more care. We also know that the person in question may need full-time care two or three years down the road. Generally speaking, we know when to respond to people. Sometimes we will get it wrong because something will come out of the blue, but we do generally know when to respond. We need to get back into that space in order that we can plan for five residential placements next year and that we can add on another five the following year. We need something like that. Depending on the size of our organisations, we need it on a pro rata basis in order that we can-----

That can be local authority led in conjunction with the organisations the witnesses represent. It just needs to happen.

It does. For those of our organisations that are approved housing bodies, the local authority piece is a little easier to work through. However, it does come down to there being a signature on page to say that there is funding coming from the HSE. That happens to no other citizen in the State.

What I am getting from the Deputy is the issue about navigating the system and the levels of complexity that any individual with a disability experiences when trying to navigate their way from, for example, hospital to home. There are some great examples of great practice happening around the country. I refer in particular to specialist case managers, who act as navigators for individuals. At a minimum, for each person with a disability - I am not talking about case managers within the HSE's system - who needs support to navigate the system and get access to the services they require, a case management-type service is hugely beneficial. There is a lot of evidence around how impactful they can be, both for the individual and their family, on the pathway of their care.

I want to move a little past discussing things that are in crisis mode. We are discussing living arrangements for persons with disabilities. Mr. O'Sullivan mentioned that Enable Ireland looks for maximum independence, choice and inclusion. That has been a theme throughout, particularly when we are talking about universal design and getting to the place where we want to be. If we could imagine that we have the resources for the housing that we need and that we have the capital assistance scheme back up and running in the right way, how will we get to the point where we will be able to hear the voice of people with disabilities who are non-speaking and who have significant learning delays? Do the witnesses have an examples of how these people's voices are or will be reflected in their living arrangements?

We would are using more assistive technology by means of the original CREATE fund and the subsequent versions of it. We have received funding in relation to supporting individuals to access and use devices and training staff around them. We have good examples. Again, in the context of one in Limerick, the principles of universal design were implemented to make apartments accessible through voice controls, touch buttons and stuff like that. As already stated, you would like to be able to replicate that.

We look at every avenue to secure funding for assistive technology and creative and innovative ways of supporting people who are non-speaking. We recently had funding allocated through Rethink Ireland for a digital bridges programme to support older adults to use technology to support their living arrangements and to have their needs met. There is also an Amazon fund around reducing the time it takes to develop care plans. We are looking at every solution to enable people, particularly those who are non-speaking, to be able to advocate for themselves.

This is one of those instances where AI and digitalisation will be a help. Fine Gael held a disability conference last weekend. It was addressed by Caoimhe Duffy who has cerebral palsy and who is training to be a teacher. She is going to be the second-ever teacher in a wheelchair. She made a very good point that accessibility is not just providing a wheelchair accessible bathroom. So many people think that is the case. When you get into universal design, it is about buttons that open doors, voice controls and all of that. Does Mr. O'Sullivan want to expand a little on his organisation's living options programme and how it brings about independence, choice and inclusion?

The living options programme is used in person-centred planning. The individual's voice is heard straight away. Included in the information pack provided is an easy-to-read version regarding the different options or stages of exploring their living accommodation, be it at home or wherever, now or in the future in terms of what their aspirations and wishes are.

That is recorded and there is an action tracker. Then we follow that up with the HSE or the relevant local authority to move it on.

On the communication point, I will repeat what Ms Fogarty said. We have a good assistive technologies, AT, department that has worked with a lot of external bodies, such as Microsoft and similar organisations, and our service owners have actively participated in the design of some of the AT. AT is a game changer for unlocking people's voices in the system, aside from what can be done in the accommodation itself.

Ms Carthy mentioned that England is doing universal design well. Will she expand a little on what is being done better there?

England has it as part of legislation. Three different layers were brought in. As I said earlier, there is universal design across the board, which enables people to live and age in their homes. Then there is universal design plus, which brings in wheelchair accessibility, and universal design plus plus, which is bespoke for people who have a high need of adaptations in their homes. There are certain percentages that run across those three different sections and that is why it works well. As it is part of their equivalent of Part M of the building regulations, a percentage of all builds have to meet these different criteria. Until we get to that stage in Ireland, we will never be able to house people with disabilities and bring the numbers down.

I will finish on this. All the witnesses mentioned that this is fiscally prudent and a sound investment and that we need to be proactive rather than reactive.

I had to go up to the Seanad and to another meeting, so I apologise for coming in and out. I did not get to Enable Ireland in my earlier contribution so my last question is for Mr. O'Sullivan and Ms Darrer. Will they expand a bit on the Bailis independent living model please? What elements of it should be prioritised for us to use?

The beauty of the Bailis model is that it is accommodated in a three-building complex in Johnstown in Navan. The apartments are spread out so there is not a cluster of people with disabilities in a particular part of it. Enable Ireland purchased an apartment in that complex where we base the staff of our outreach service, who also do outreach to a number of people in the community. It is a model that works well. It focuses on people's independence and gives them access to their community and a local community. From a cost point of view, our experience is that is more cost-effective than a standard residential place. They are the real advantages it has. Access to the community and independence are key.

Can Mr. O'Sullivan see that working in other areas?

Again, it would be part of a suite of services. With the range and complexity of disabilities people have, there is no one size fits all.

That is a good point.

However, this is an opportunity where people who are capable of living independently, such as Jane, are able to do so, rather than having to live in a residential setting.

It depends on the person.

Yes, it has to.

I might direct my question to Rehab. Will Ms Fogarty speak further on the issue of staff recruitment and retention? Does she want to add further comments about the challenges and what supports Rehab needs, in particular from the Government, to continue to do the fantastic work it does?

I also have a wider question for everyone. It is a bit simplistic, but I would like to hear the witnesses' views. Do they think the future is looking brighter? Are we making progress in the area or are we going backwards? Are there particular areas we are making progress in perhaps and others they are worried we are going backwards in?

The most important thing is recognition of the requirement for pay parity. It is unacceptable to have colleagues doing exactly the same work, sometimes a short distance away, like half a mile down the road, and receiving less pay for it. That is fundamental to staff recruitment and retention. We have employed various strategies in recent years to try to improve retention and some of them are working. However, it is incredibly difficult in the context of the cost of living. Our staff have families to support and mortgages and bills to pay like everyone else so it is understandable that people will leave a role to join another organisation for what might seem like very little money. That is the reality. Pay parity is critical for us as a section 39 organisation. Within the sector, wider recognition of the importance of the work done by section 38 and 39 organisations and the HSE - that is, recognition of the value of the community and voluntary sector - is needed. Sometimes it can be negatives that are reflected on instead of the positive outcomes for the people we support.

I will go back to the Senator's question about where we are going and whether it is a positive move forward. For open disclosure, I am a parent of a child with autism and disability and I have been coming up here for 23 years to my local representatives. I have been in this committee room three times at this stage. We fought for a ministerial position in the past, and that came about. Then we argued the point that the Department of Health is not the right fit for disability and it has now moved as well.

On the point Mr. Hegarty made about the budget moving, the power is with the money, and that is important. I presume this is my last time, now that I am one of the older people at it. Is there a positive move? Until about a year ago, I would have said "No" and that we were not making any progress. The Department of Health disability capacity review published in 2021 said we needed between 1,000 and 1,500 new residential houses by 2032. We need to have that by 2032 and we have fallen well short of trying to attain it at this stage. Until about a year ago, I would have said we were not making any progress, but something has changed and I do not know what it is. In the HSE structure - I should not mention people - Aoife O'Donohue moved into one of the departments in the HSE and that has made a difference. For parents with children with a disability, there is a huge difference between an organisation having compassion and having empathy. Empathy is grieving with the person, but people with compassion do something about it. They understand where we are coming from and say they can do something about it. A change in the past year seems to be filtering in to all parties in the Government and outside it. There is more of an emphasis on disability now. For a long time, we were fighting.

We have fabulous facilities in Charleville, thanks to the Government. We have a swimming pool, a running track and so on. Every Friday, we would turn the key in the door and walk away. We put in submission after submission to be able to keep it open at the weekends so families, parents, children and adults with disabilities could use it and have a meeting place at the weekend. It just took one visit from that department and now it is open.

We are open Saturdays and we will be open on 26 Sundays next year.

There is a positive shift, but it will need all members to get behind it and keep behind it. The committee's job will be to block the blockers. We are not blocking this. We have facilities, and all our agencies have fabulous facilities. If the committee stops or blocks the blockers, we will have very positive disability services.

I thank Mr. Doyle for his important contribution.

Mr. Hegarty spoke positively about the engagement with Limerick County Council in securing housing for people with disabilities. Has his organisation had similar dealings with Cork County Council and, if so, how would he assess that council's approach?

For whomever wants to answer it, I would like to ask about the requirement for people with an intellectual disability to be on a local authority housing list to qualify for placements. Is that really an appropriate system for somebody who may have a moderate intellectual disability, who may not be in a position to engage in weekly bidding processes and whose parents may be elderly and not digitally confident? I just want to be clear. I am not trying to stereotype people with intellectual disabilities or older people. I am speaking from direct experience of supporting families in such circumstances.

The only way people can access new social housing developments is if they are on the waiting list. Should that be the case? Possibly not, but I do not think it is a barrier. It is a case of being supported to fill it in. It is a paperwork exercise. It does not take too long to do. There is merit, however, in the point the Deputy is raising in relation to it. There is no question about that.

To support the people coming up the line in accessing this funding, I keep going back to multi-annual planning, as Mr. O'Sullivan did earlier. If we had multi-annual planning in place, the crisis would not present. We know who is coming down the tracks. We know how they should be supported. We are the most in tune with them, more so than any Department or any system, as I said previously. If there were trust in us and we were given credence, we would certainly be able to deliver more and better services, on time, for people as they need them.

Is there a danger that some service users are missing out on potential placements because of that system of having to bid?

Within our services, we are actually not on the bidding system. They have to be on the housing list for us to get the CAS funding to develop for them, as opposed to them clocking in on a Wednesday morning and looking for a house. I think some of our other colleagues here might have people in situations like that.

Would anybody else like to comment? No. I ask because I have encountered this quite recently with another service provider.

In the St. Joseph’s Foundation, we encourage people and almost make sure they get on the waiting list. As they hit their adult years, they should just do it.

I ask, in a broad sense, about the financial challenges being faced in planning for the future as opposed to just keeping things ticking over or keeping the lights on. Will Mr. Hegarty say a little bit about that? What could be achieved with multi-annual and more ambitious funding going into the voluntary sector? I know that is a very broad question.

Going back three years ago, all of our organisations received a budget for inflation measures when the war in Ukraine came about. For our organisation, that was €950,000 just for inflation costs. Inflation has gone up since, but that money did not come the following year or the year after that. If we just get our core budget each year, we are in a deficit because of inflation and pay increases. As people work an extra year, their salary goes up. I suggest that all our budgets be index-linked. That would be a prudent thing to do for sustainability going forward.

I concur with Mr. Hegarty. From a section 39 perspective, our residential services are in an insufficient position year-on-year, so it makes planning for residential provision difficult, if not requiring reducing targets. In the context of the crisis around housing, this is not a positive for an organisation, but we have to be realistic. Statutory increases are huge for us, year on year. I highlighted in the paper that we have not even received our payment for our bank holiday. That is the statutory funding we have to pay to the staff working in residential services. Again, this impacts residential services only, and it is really difficult from an organisational perspective.

To add to that, the auto-enrolment that has come in is a huge expense for organisations which we are not being funded for either.

Before we conclude, Ms Fogarty mentioned Mr. Price as an employer. That company's name pops up all the time, regardless of which committee we are on. It comes up in the disability committee and the Traveller committee, which I am also a member of. Mr. Price is mentioned for the work it does with people with disabilities, Travellers and people who are under-represented in the workforce. The company should be commended. I wish there were more companies as good and as progressive as it is in dealing with these issues.

I propose that we publish the opening statements on the committee’s website. Is that agreed? Agreed.

I thank everybody for coming in today. We will now go into private session to deal with other matters. Is that agreed? Agreed.