Joint Committee on Disability Matters debate -
Wednesday, 18 Sep 2024

Apologies have been received from Deputy Coveney. Today's meeting is to consider aligning disability funding with the UNCRPD. On behalf of the committee, I warmly welcome the Minister of State with responsibility for disability, Deputy Anne Rabbitte. I also welcome the officials from the Department of Children, Equality, Disability, Integration and Youth: Margot Loughman, principal officer, disability finance and reform unit; Sarah O'Brien, assistant principal, disability equality policy unit; and Jenny Andersson, assistant principal, disability children's services unit.

The Minister of State may call on her officials to speak briefly for clarification during the meeting. Where a specific technical point arises, officials can clarify issues for the committee. Any follow-up questions should be put to the Minister of State because she is the accountable person before the committee. I am aware that a wide range of issues are the subject of today's discussion. If necessary, further and more detailed information on certain issues raised can be sent to the committee secretariat for circulation to members.

On privilege, witnesses are reminded of the long-standing parliamentary practice that they should not comment on, criticise or make charges against any person or entity outside the House 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 witnesses' statements are potentially defamatory in respect of an identifiable person or entity, I will direct them to discontinue their remarks and it is imperative that they comply with such directions.

Members are, of course, reminded of the selfsame parliamentary practice. Members who are joining us remotely must be within the confines of the Leinster House complex to contribute to a public meeting.

Without further ado, I call the Minister of State to make her opening statement.

I thank the Cathaoirleach, the committee and its officials. I apologise for my lateness.

I am pleased to be able to address today’s session to discuss aligning disability funding with the UNCRPD. At the outset, I acknowledge the cross-party work of this committee and its efforts in seeking to drive progress for people with disabilities in line with its remit to monitor implementation of the convention. The Government is committed to providing services and supports for people with disabilities that will allow them to live ordinary lives in ordinary places, in line with commitments under the United Nations Convention on the Rights of Persons with Disabilities.

In recent years, significant resources have been invested in disability services. This is reflected in the budget for disability services, which has increased from €1.7 billion at the close of 2017 to €2.9 billion in 2024. The additional funding allocation of €272 million for 2024 demonstrates the Government’s strong commitment to building capacity in this area. The allocation for 2024 included €74 million for new developments and is helping to support in the region of 100 extra residential beds. It is also important to say, just coming off conversations about the budget, that we are looking at close to 200 beds in residential places. There has also been funding for the purposes of the HSE’s commitments to residential services under the HSE-Tusla joint protocol, 125 extra therapy assistant positions for CDNTs and 1,250 to 1,400 further day services places for school leavers. After meeting with officials today, I know 1,500 school leavers actually availed of the services. The funding allocated was also for an increase in the provision of personal assistance of 80,000 hours, development of further respite provision and development of capacity for community rehabilitation. I suppose what I should really say is that when I tell the committee I have gone over in some areas, this means I have overspent a little bit. That is what the officials are telling me.

Although the extra funding in budget 2024 was welcome, we know there is more to do, which is why we have developed a comprehensive action plan to help improve and expand services out to 2026. I was delighted to launch this plan with the Minister, Deputy O’Gorman, and the CEO of the HSE in December of last year. Working in tandem with the action plan is a road map for service improvement in children’s services. The road map contains an important set of actions that, collectively, will enhance children’s disability services in Ireland. They include significant measures to integrate and improve access to services, expand the workforce and advance better communication and engagement with families.

In March, I was delighted to announce the launch of the disability participation and awareness fund for 2024, which has a strong focus on supporting persons with disabilities in their own communities with a view to increasing participation across the country. The €3.5 million fund will help to promote disability awareness and training in local communities, increase participation among disabled people in social, cultural, arts and sporting activities and support pathways for young people with disabilities in transitioning through education. In May, a HSE person-centred planning resource was launched to support people with a disability who avail of adult disability services to make their own choices and decisions while planning for the future. The resources include information on person-centred planning for adults with a disability, information on the role of families and circle of support and an e-learning module for staff with certification. In July, I announced €23 million in capital funding for disability capital projects in 2024 and I have asked the HSE to develop the first ever disability-specific multi-annual capital strategy. In August, the autism innovation strategy was published. It aims to provide the building blocks for a more inclusive society, where autistic people are understood and have equity of opportunity to participate in cultural, social and economic life and lead meaningful and fulfilled lives as valued members of the community.

These are just a few examples of the work ongoing across the system to ensure our disability services are aligned with the UNCRPD. Many other developments are, of course, under way that are fundamentally critical to this ambition, including the development of the next national disability strategy. My priority in budget 2025 is to secure funding to further increase service capacity and enhance our forward-planning capability to deliver services that support persons with a disability to live a life of their own choosing in their communities.

I look forward to hearing the views of the members on how we can work together to build on this progress and continue to align funding for disability services with the UNCRPD. I thank the Chair.

I have a few issues to raise. On respite, when the Minister of State came into office she indicated that nine additional respite centres were going to be established. Are they all operational? Can the Minister of State give us an update on the situation? I was talking to someone recently who said more than 83 families were denied respite for four years because of two back-to-back emergencies being left in the respite centre. Can we have a system where that does not happen? I know it did not just happen in this one centre. In this case more than 80 families were affected adversely.

Turning to section 39 organisations and pay parity, does the Minister of State have an update on this issue? How will it be addressed? We are talking about day services and increasing their number. This is needed. Many of those organisations, however, cannot recruit or retain staff because of the issues of pay parity and multi-annual funding. Both those issues need to be addressed.

The Minister of State indicated previously that a register for disabled persons' organisations, DPOs, would be drawn up. Is there an update on that? What stage is it at?

People with intellectual disabilities are often forgotten when it comes to housing in that people age and may have no choice as to where they live. They might live with aged parents, putting a lot of strain on them. Younger people are being put into nursing homes because there is a lack of availability of either accessible housing or supported living. There is a report in one of today's newspapers that 32 people a month are going into nursing homes, or one a day. That is not fair. It is not giving them a choice and it is in contravention of the UNCRPD.

There are still huge issues with the children’s disability network teams, CDNTs. People in my constituency cannot get the supports they require from the CDNT. One parent was looking for psychological treatment for her son because he is displaying behavioural issues and he was referred for a cognitive assessment, which he did not need. The mother said they availed of it because it might help him to get a school place, but she needs support and has had none. She is at breaking point, and she is not the only one. Many people are in the same position. The Minister of State referred to assistant posts but therapists are needed in the CDNTs. The family are even looking into private practice, where operators are paid substantial sums to carry out assessments outside of the CDNTs, which suggests the system is broken. What can be done to address that?

The Deputy asked about respite and I have made commitments there. Yesterday, I published the €15 million respite investment plan. I do not know whether she has yet seen it, but she will see clearly how the €15 million is being spent among the nine CHOs. In her area, CHO 1, €1.6 million has been allocated this year, which will amount to more over the full year. The €15 million is what was allocated this year but in a full-year cost, the figure will be €25 million. There are a number of buildings in the Deputy's constituency and throughout CHO 1 where that was needed.

It is not just about the type of respite we all know in the conventional sense. There is also the alternative, after-schools respite and the existing services, albeit not so much in Cavan-Monaghan, which I acknowledge. That is why the investment is going in to build a respite centre on each side, as well as the residential, which will go full tilt on five out of seven nights. We already have the buildings there and we do not need to build, and they are included in those packages. I set that out yesterday, rather than re-announce it or anything else. It is what was allocated in last year's budget. It is important to set out the stall in order that people will know what is going in already.

On the section 39 organisations, progress has been made and there are a number of issues to be resolved in the context of the funding stream. Staff will be covered within the scope of an agreement but the talks have been paused to allow the parties to review their positions with a view to developing solutions and highlighting sticking points. Communication between the Departments and the unions is ongoing. When these talks took place this time last year, key wording of "aligned to" was inserted into the proposal such that the section 39 organisations could be aligned. Unfortunately, however, as the Deputy and everybody else in the room knows, when the talks took place, there was a focus on the 8.5% or 9.5% pay adjustment for healthcare assistants, but the figure was multiples of that. Between the Department and the unions, those talks need to focus on healthcare assistants as well as addressing the gap for clinicians.

In respect of the register for DPOs, I might hand over to Ms O'Brien.

I think everyone across government is committed to the principle of "nothing about us without us" and the fulfilment of our obligations under Article 4.3 of the UNCRPD, which sets out the role of DPOs. Under the next national disability strategy, that is one of the things we are looking at. We are seeking to co-design, with stakeholders and DPOs in particular, the appropriate structures for the development, implementation and monitoring of policy, including the next national disability strategy and where that sits in the broader policy landscape. We are working to build on learnings from the disability participation and consultation network, which was reviewed by the National Disability Authority last year as part of that work. Crucial to that is the issue of capacity building within DPOs to ensure that consultation will be effective and that DPOs will be resourced to interact meaningfully with the State.

On the issue of a register in particular, any register of DPOs will require careful consultation with stakeholders as to the criteria appropriate for that mechanism, and the precise mechanisms of this work are being worked out in consultation with DPOs as part of the building blocks for the next national disability strategy.

All right. As of May 2024, 1,242 residents under the age of 65 were in nursing homes, of whom 85% were over the age of 50. Funding has been provided to support 81 people to transition to homes of their choosing within the community. A total of 340 residents will continue in their nursing home placement due to their current personal will and preference or due to an assessment of their needs, while 44 people have received enhanced quality-of-life supports while continuing their placement in nursing homes as transition planning is ongoing. Investment will continue. Eighty-one transitions have been funded. It is not just about taking the person out of the nursing home but also about ensuring that the home will be adapted or that whatever the person chooses as regards housing will be accommodated. There are a few steps in transitioning people. Housing is one part of it but the care package will go with that. There is ongoing work in that regard. When we started, we were able to do only about 18 in the first year's budget, but we are now at 81 and that is increasing all the time.

Absolutely, there is still considerable pressure on our CDNTs. We have funding for 720 posts that are there. We ran the recruitment campaign but, as the Deputy noted, a lot of professionals are choosing not to work on CDNTs. There is no denying that, but we have the funding ring-fenced to ensure we can still attract people from abroad and current fourth-year students. We are also looking at the apprenticeship model, which we have seen work very well for social care, and at other models we can use as well. We have a workforce planning and steering group working on that. It is not just the Department of disability that is represented on the workforce planning group but also the Departments of further and higher education and Health, the HSE, CORU and other stakeholders. It is everybody talking together to see how we can drive it forward. This year, it is fantastic to see we have had a 33% increase for this September and the following September in the number of college placements for occupational therapy, physiotherapy, speech and language therapy and dietetics. On top of that, we are also looking to address the issue of assistant posts with an apprenticeship model.

I thank the Minister of State and her officials for attending. We have a terrible problem relating to children with autism and other special needs getting places. It worries me that we are always fighting until the last minute to get places for people and there seems to be no roadmap or plan in advance. It seems to be constant. I appreciate that the Minister of State is not dealing directly with this but it is a very frustrating issue.

The disability awareness fund amounted to €3.5 million for 2024 to help people with disabilities to get involved in the community through social and cultural events such as sports and so on.

This fund is only for pre-existing projects and must be spent within a 12-month period. Are there any plans to look at that? There are other projects that could be utilised. Are there plans to provide more funding to look at that?

The disability payment is means tested. People who have mental health issues such as schizoaffective disorder continually have to reapply. This is a lifelong condition. Has this really been looked at? Now and again these things come back to people who have clear disabilities and they need to be reassessed. It is very annoying to deal with it. It is absurd that a person who has an arm missing is not deemed eligible for a disability payment. We are told it is happening and it looks that way.

I ask about the resources that are being put into mental health for children. Some young kids are using vapes and some kids are using drugs affecting their mental health. What further actions, preventions or advertising are taking place? Will the Minister of State give us an idea of what the Department is doing?

Is additional funding being provided for marginalised communities such as Travellers? I presume everything is disability proofed; I would certainly like to think so. Are we getting closer now? I know that the optional protocol to the UNCRPD has not been fully implemented. Are there issues the Department needs to address?

I will start with the disability participation awareness fund, DPAF. That money was first secured four budgets ago. Never before in the Department of Health had funding been secured for anything other than a health need. That funding was got on the basis that it is not all about health needs. When I got that funding, the first piece of it started at about €2 million. A lot of work went in just to secure it. It was all about the awareness of the training piece because I felt a lot of that was missing. In the first round of that funding it was about giving it to the local authorities. My vision for it at the time was not about the training and awareness but about the participation side of it. I was looking at it through the lens of universal design.

We were coming out of the Covid period when a lot of greenways and footpaths were being done. I asked if there was enough funding there so that they could finish different jobs to ensure accessibility so people could participate. It was amazing that when the money went out to the local authorities, on average they all got about €87,000. Some 70% of it came back in indicating they all needed training and awareness on it. That was not really what it was all intended for. I know that Ability West in Galway got a wheelchair buggy. They also looked at putting in a changing space along the promenade. That as well as the training and awareness should have been what it was about. I had always envisaged that the money would go through the local authorities because they would ensure they had the extra piece of equipment for their playgrounds, but they did not get what the vision behind that was or they did not read the memo, I do not know which.

The second time it came around, I was getting out and about more. I saw the organisations the Deputy talked about that were doing wonderful projects but may not have been getting the recognition because they did not have a big backroom team. They were not any of the main providers and they did not have any of those resources. The first thing I would have thought about was the Together Academy, which is based here in Dublin. It is about Down's syndrome children trying to access education and become baristas. They actually had a memo that they could share with all the different Down's syndrome organisations around the country. Maybe they needed support as to how to scale that and how to present it. That is what it started to evolve into.

Then there was the cultural piece relating to connecting arts here in Dublin where during the Covid pandemic online art was being provided for it. The great thing about that is they were supporting approximately 50 individuals in the Dublin area. They were able to get on the bus and come in from Stewarts Care or St. Michael's, do their art and do their yoga. However Marion was doing it on nothing. Everybody was getting money for day services but Marion was getting nothing at all for supporting the service. That is where that went to.

There was a really good example with No Barriers in Donegal this year. It had a gym and was supporting everybody. It was a completely inclusive gym. Everybody could participate in it. However, there were OTs or physiotherapists working in it. It was buying equipment in response to the needs of people using its gym, which meant it was attracting more people. It was very successful in getting funding through the rethink programme of the DPAF for those with Down's syndrome in Donegal. It was about how we can teach other young people around the country about how they can participate. That funding is at €3.5 million. I hear exactly what the Deputy is saying on it.

Last year I had a line in it on transition planning. It had a very poor uptake. It seemed there was a lack of understanding about what transition planning looked like within the community. I am trying to look at employment and transition planning and awareness within it. I sit down and talk to the team in Rethink. I do not have any involvement nor does the Department. It is good to step back and look objectively at the organisations that are out there. I was very clear that the funding could not go to organisations that are already well supported through the HSE or were being funded by various LEADER programmes or anything else like that. I wanted it to be about the community within the community and participation. That was what it was about. We are seeing some brilliant projects but they might never get the eye of any Department or the HSE as to the value they had to the community and, most importantly, for individuals themselves.

The Deputy asked about resources for mental health. There is a document called the national access policy, NAP, where primary care mental health and disability should all be working very closely together. In some areas it works really well. In some areas it is not so good and in others some would say it is not good at all. Once a month the six RHOs sit down to assess and discuss cases that need assistance. There should be no wrong door. There should be one front door and that team should be able to signpost along. The Minister of State, Deputy Butler, has launched certain apps to support children with ADHD in that space.

The Deputy spoke about marginalised communities. Earlier today I attended a commemoration for the 80th anniversary of the genocide of the Romani community. The education strategy for the anti-Traveller and anti-migrant piece was launched in July. That will be very important for us all knowing each other's culture and all appreciating everybody else's values.

I apologise that I cannot remember the Deputy's last question.

That point is part of the DFI's submission. It is looking to have disability inclusion officers. The local authorities have done that very well with Age Action.

Is it not a little bit of a miss that we will have a disability officer, an inclusion officer and an age-action officer? Should we not have an inclusion team that do this? Life consists of different stages for people. Inclusion is for all stages, depending on one's background and whether one is from an ethnic minority, or whatever. We are all going to age. Once we turn 50, we will all acquire a disability. Perhaps all the Departments need to discuss this. It is a great opportunity to roll it out through the Department of housing which has the housing adaptations and everything else like that. Maybe there is a need for a collective effort. The Minister of State, Deputy Butler, puts €5.2 million into the Department of housing for Age Action. I am looking to get into that space, but at the same time, I think it needs to be more joined up for that purpose.

The other thing was regarding people getting disability payments. They are constantly getting sent out. They might have mental health issues like schizo-affective disorder or something like that. Even a person who has an arm missing has been refused. That has happened. I am sure it is an area that is being looked at.

Absolutely. I have constituents coming in to me about this as well. Sometimes, there has to be more of an understanding within the Departments or within the areas that are supporting those payments, so that they understand what they are reading. I sometimes think people do not understand what they are reading unless it spells out "loss of limb". I think they do not really understand the rest, or what is behind it.

Over the past couple of weeks we have discussed many issues in relation to budget 2025 including personal assistant hours, carers and the costs of disability. I believe this is the Minister of State's fifth budget. Each year she has achieved better and greater than the year before. There are many pressures on the system on a daily basis which have been outlined by my colleagues here and by the Minister of State. We all face these pressures. The Minister of State has also had a change of Department. With the help of this committee, we hope the UNCRPD has taken a higher ground and a greater emphasis. How does the Minister of State feel about her achievements? There have been many and we need to get more.

The Minister of State mentioned this in relation to other Departments. Does she think that the dial is moving within the other Departments in relation to their obligations under the UNCRPD? Has the Department of Public Expenditure, NDP Delivery and Reform looked at the action plan under the lens of the UNCRPD? When the Minister of State is going in hard-balling in negotiations we are rooting for her and for our constituents who need this action plan to be funded.

At a local level, I want to ask about respite services in CHO 8 in Louth. I will leave that open-ended question to the Minister for State.

I thank Senator McGreehan. There is no doubt the dial is moving but the pace of it is another thing. It is wonderful to be getting funding from the taxpayer that ultimately, gives me the money to provide to the HSE which then provides it to the various stakeholders to operationalise it. I am privileged to be able to secure funding but getting it operationalised is a huge challenge, as is following the money. There can be no denying that. I do my job, which is to secure funding and I work with the Minister, Deputy Donohoe, and previously with the then Minister, Michael McGrath, to ensure that we get as much money as possible. Over time, I have learned how difficult it is to get it operationalised and to follow the money and at the same time, realise the challenges of the sustainability of the sector as a whole. Recruitment and retention are also major issues. Moving Department was an excellent thing because it allows for a sole focus on disability. When we want to look at it through the lens of the UNCRPD, we look at the person and we do not see the disability. We see the life approach to the person; the needs from the start, if it is a child born with a congenital condition. We look at the different life stages and transition points on it.

We need to ensure there is funding and awareness at the different transition points. We are poor in some areas of this awareness and some of these transition points. We should not be. Transition planning should be absolutely clearly understood from the early years into junior infants, from sixth class to first year and also going on to third level and from there to day services. With transition planning, if we know that the child has been within the system and there have been great relationships with the parents all the way through, planning in July for what is going to happen in August is not progress, as far as I am concerned. We need to look at this. It is one of those pieces which involves the lens and moving Departments. We have a wonderful team with a person looking after the UNCRPD, a person looking after respite care and a person who is sitting here who is following the money. The team is wider than that but it needs to be matched in the HSE to allow us to have bilateral conversations. That is a really important piece, because maybe we did not have this broad approach that was crystallising down to consider whether it was UNCRPD approved, is the funding going to where it is supposed to be going, are we following the commitments we gave to the taxpayer in our budget day regarding whether the money was spent on the line for which it was obtained and going to the target measure it was intended for, and is that clearly understood across all Departments. That starts with the early years Department and the Department of Health all the way through it. The point about understanding has already been brought up in relation to the Department of Social Protection and ensuring they understand what that condition is that has come before them. There also needs to be an understanding within the Department of Education of the different transition points. The question needs to be asked as to why we are only starting to plan in July for somebody who needs to go to day service or for personal assistant support for someone who is transitioning to college. This should be done in fifth year. We do career guidance planning for everybody who is planning their third step into third level. We should be treating all our children equally in having the same transition point planning.

Then it goes on to housing and universal design. When designing for the public realm we need to ensure that the seven principles of universal design are applied. We then go into the area of transport. There is a lot of work to be done in the Department to make completely bullet proof the optional protocol on the UNCRPD. I do not think any Department is perfect.

Regarding the Senator's question on respite care in CHO 8, this is the most complex CHO in the country because it was divided up into Louth-Meath, Offaly-Laois and, help me out here, there was-----

There are four in it and they are broken into two each. The dividing of CHO 8 did not lend itself to best serving the residents when there was a need for services. That is not just in relation to disabilities but various other waiting lists as well. The new reconfiguration will support the residents better going forward. For CHO 8, €1.8 million has been ring-fenced for the development of respite care. Joe Flaherty would kill me for forgetting Longford. Longford-Westmeath is the other area. Children's service in Longford are seriously lacking. The Senator's area has respite services but it is the growth of respite services that is required, where we have a huge commuter belt, ring-fencing Dublin.

Before I ask my questions, and following a discussion we had in private, I would like to say that we do not know if we will meet again in similar circumstances or for how long we will continue with our work in this Dáil term. Therefore, I want to recognise and put on the record the very strenuous efforts the Minister of State has made and her absolute integrity in everything she does with regard to disability. I thank the Minister of State for all the support she gives to disabled citizens, the community of carers and people who are neuro-divergent. I also thank her for the support she has given me in respect of my legislative initiatives and so on.

I was very struck when Deputy Harris was appointed Taoiseach that one of his first announcements was that he going to fully ratify the UNCRPD and the optional protocol. No doubt the Minister of State and the Minister, Deputy O'Gorman, must have spoken to him about this. Can the Minister of State tell me precisely when the Taoiseach is going to do that? What is the plan?

It has become abundantly clear that the Minister for Children, Equality, Disability, Integration and Youth was given legal advice to the effect that the wording of care referendum ought to ensure disabled citizens have no legal or socioeconomic rights to care outside of the family. That has been made very clear. It has also been revealed that the Minister for public expenditure and reform, who spoke very clearly on this, warned against giving disabled citizens socioeconomic rights that would expose the State to a financial burden. The Minister campaigned on that basis, particularly in respect of the care referendum, for quite a number of months. That is clearly his, if you like, ethical, philosophical and ideological view. The Minister for Children, Equality, Disability, Integration and Youth, on a very simple semiotic reading, does not believe disabled citizens ought to have socioeconomic rights enshrined in the Constitution, or in any law, and that seems to be a view that is shared by his Cabinet colleague. That is obviously the policy of the Department.

How does the Minister of State reconcile that with the aspirations as set out in the UN Convention on the Rights of Persons with Disabilities? I do not now know how she can reconcile or align those views and actions, that kind of campaigning and the wording that was proposed, with the aspirations as set out in the UNCRPD?

As an appendix to my question, does the Minister of State think she should be a full Minister and sit at the Cabinet table? It is clear there appears to be a conflict in terms of the aspirations, as set out in the UNCRPD, and the job the Minister of State is trying to do, and the prevailing view of the line Minister and his Cabinet colleague.

The Minister of State said, and it is set out in the UNCRPD, that one of the aspirations we have for our disabled citizens, for people who are neuro-divergent, for the elderly and for everybody, and not just those with disabilities, is that people at all the life stages should be able to fully participate in the cultural, economic and social life of the State. I will give one small example. Last week, I had to work in Washington for the week and because I was away it meant that my adult son had no assistant because I was not there. He does not have a service during the summer because the hours provided to him by the HEA do not cover all of the summer period. That means if I am not there, he has to sit in the house all day. He cannot go out as he is a vulnerable person. I managed to identify and source PA hours for him privately. We got 37.5 hours for him last week at a cost of €750, so that he could go out and maybe have a hot chocolate, go to the cinema, just get out and go for a walk, go to the shop by himself or go into town.

I am here almost three years and I get representations from people and make representations on people's behalf. I think I know where most of the leavers are for trying to secure these things but I cannot secure those supports for my son and I am a Senator.

The Minister of State said 80,000 extra personal assistance hours have been funded but here is the thing. A student in Cork, Ms Evelyne Cynk, has secured a 24-hour care package to enable her to live independently in student accommodation and attend her course. We have one CHO that says "Yes" to supports but there is another CHO, for example, the one I am in which is CHO 6, which says "No" and that does not seem to be based on any assessment of the needs of the individual. It seems to be purely based on the capricious, idiosyncratic whim of the person.

The Minister of State has fought hard for the funding and I have been in the room when we discussed this, so I know how committed she is to this. The funding has been made available but the gatekeepers are refusing to allow that money to be spent and are refusing to release it to the people who need it most. I gave the example of the lived experience. I am not shy about asking for it or trying to push for it but it is just not happening. That situation leads to the de facto imprisonment or warehousing of a person if they cannot get out.

In that regard, I hope the Minister of State will support my personalised budgets Bill, which I will introduce shortly. I have circulated my Bill to all of my Seanad colleagues. In fact, my Bill is being co-sponsored by some of her colleagues in Fianna Fáil and I really appreciate their support. I believe my Bill will go some way towards addressing the issue and will hand the power over to disabled citizens as opposed to an institution or a body of the State.

In regard to the disability stakeholder group, DSG 6, I have been informed that DSG members received a letter on 24 July saying that as their term comes to a close, the decision has been reached not to re-engage them. The letter says the Minister of State is going to co-design a new sort of engagement process. With whom does she intend to co-design an engagement process to replace the DSG model? Will people who have previously participated in the DSGs be allowed to submit an expression of interest to become involved in the next iterative device?

Finally, in terms of bringing all our Departments along and moving the line, I have been told that the accessibility consultative committee of the Department of Transport had held no meetings since November 2022. Why? Can the consultative committee be prevailed upon to resume its meetings?

I am concerned about a lack of consultation with disabled citizens. Similarly, with the new road traffic management plan for Dublin, I think it feeds back into those concerns.

Again, they all feed back into the aspirations and principles as set out in the UNCRPD. I have asked a lot of questions and I thank the Minister of State for her patience.

In respect of the DSG 6, we are heading into the new disability strategy. When the last disability strategy was set up maybe there was not a huge awareness about DPOs, the person-centred approach and that lived experience. Maybe the definition of co-design actually recognises DPOs, DPROs and bringing everybody together, including the parents.

There are parents of children who would like to be able to participate. We need that lived experience of providers of care for people with disabilities. The codesign piece is necessary. Those who are already there will absolutely be able to submit expressions of interest. They have experience; why would we not want that experience coupled with people who will be new to the programme? That answers those two questions.

I must acknowledge that the Taoiseach spoke today in a very positive sense about personalised budgets. Personalised budgets are empowering but when do they become what they are? When is the right time to begin them? It is part of one of those transition plans. We need a proper policy and basis for them. We spend a lot of money on PA support but we must ensure there is a framework for PA support and personalised budgets. We have a personalised budgets pilot that was brought through the previous Dáil. To me, we will have outcomes on it. If a person were to submit a freedom of information request, he or she would find out that I tried numerous times nearly to stop it. The reason for that it that it was cost-neutral. When there is not extra funding going into it, it is difficult to make the progress required. There needs to be a complete review of PA and personalised budgets. There is a lot of money being spent in that space but at the same time we could empower the disabled citizens and young people to have their packages. This is done in a lot of European countries in the context of their direction of travel in their own communities and to empower their lives. It was wonderful to hear the Taoiseach speak about this today on the floor of the Dáil. He is thinking in a similar vein.

The Senator asked about the difference between one CHO and another. One has to wonder why there are such variances between one CHO and another. It is not acceptable. That is why there needs to be a standard framework and accountability, with equity of access to PA supports as well as personalised budgets. What I have discovered is that when a person is in a service for X number of years, trying to unravel all of that has been very challenging for some of those who have gone through. I am sure that is what the findings of the report will tell us. If we take Eoghan as an example of somebody who has come through his leaving certificate and is working his way through, if he had that personalised budget in order that he could self-direct as to how he would like to use it, he would never need an unravelling from within the system. He would procure as he go along. In such a case, the person does not enter that institutionalised space, as some would view it. There is work to be done on that, absolutely. I have invested in this. As Minister, I have added almost 300,000 hours. There should not be the variance between CHOs to which the Senator referred.

Do I believe there should be a full Minister for disabilities? I absolutely do. Of course there should be a full Minister for disabilities. If we want to be true to the UNCRPD and to the equity and equality approach of it, we have to look at the life approach of it. There is a great team being set up within the Department. If the team were to be held together and given a full role, that would be great. There is a good working relationship within the Department of Children, Equality, Disability and Youth, to be fair, including the assistant secretary, Colm Ó Conaill, and the Secretary General, Kevin McCarthy, along with the Minister, Deputy O’Gorman. It has expanded to be a really good space. If we could match what the HSE is doing with staff for staff, it would be very helpful. The Department could be getting answers regularly, there could be real accountability, we could follow the progress and I would be able to say what has been done in each CHO.

As regards the optional protocol, they are meeting again on 20 September-----

As regards the policy of the Minister, Deputy O’Gorman, to campaign for wording that would not give socioeconomic rights to disabled citizens and the view of the Minister for Public Expenditure and Reform that this would not be a good thing and would place a burden on the State, how does the Minister of State reconcile that policy position at the head of the Department with her own aspirations and the aspirations set out in the UNCRPD?

All I can say is that when I go to do something within the Department of Children, Equality, Disability and Youth, I have 150% support from the Minister, Deputy O’Gorman. I will go to the Department of Public Expenditure and Reform tomorrow and the Minister, Deputy Donohoe, will be sitting in front of me. While he is a tough negotiator, his is very supportive of people with disabilities at all times. I have grown the budget by €800 million since becoming Minister. I certainly would not have grown that budget if what the Deputy outlined was the viewpoint of either of the two Ministers. I can only speak to how favourable they have been to me and my delivery within this Department.

In respect of the optional protocol-----

I welcome the Minister of State and her officials to the committee. I have been listening to the debate since I came into the committee room. I read the Minister of State’s opening remarks - I was in the Dáil while she delivered them. I will return to the Committee on Budgetary Oversight when I am finished here. Like me, the Minister of State gets queries coming into her constituency office. When we look at people with disabilities and things that should be changing but are not changing, one thing that stands out is the disabled drivers and disabled passengers scheme and the primary medical certificate. There has been no change to the criteria. This week alone, two people who do not have the use of one of their arms due to surgeries visited my office. Both of them have been refused a primary medical certificate. They cannot drive a car unless it is adapted to suit their needs. They are losing their independence. One of them is a young man and, having gone through the trauma of treatment and so on, he finds himself in a very poor place at the moment.

Anther issue which came up this week is EmployAbility services. Two people who visited me had a problem having left the employment they were in. One person’s condition flared up, which meant he could not work. He is now ready to go back to work and his employer wants to take him back and the EmployAbility service wants to put him back to work, but there is some kind of a standoff whereby, for whatever reason, the Department of Social Protection will not give the re-referral to let him go back to EmployAbility. These are two such cases. I can send the details to the Minister of State. There seems to be an attitude since the EmployAbility services changed their status. There seems to be a standoff on it.

I was going to ask about the optional protocol but the Minister of State has answered on that.

Regarding CDNT staffing, has there been any progress in bringing people back to the country, such as speech and language therapists? Has anything happened in the past year or two years such that we see numbers of them coming back? Are we attracting them back?

On disabled drivers, we had the national disability inclusion strategy transport working group. That was done and it was comprehensive.

We saw exactly where the money for transport is being spent across all the Departments.

Regarding disabled drivers, the Minister, Deputy Donnelly, put back in place the people who were based in the NRH in Dublin. They were the board that makes the determination. They are back in. On the scheme, we are advocating and talking to the Minister, Deputy Chambers, about that because it is a Department of Finance matter and that Department will have the final sign-off on the disabled drivers scheme.

I know it is the Department of Finance that makes the decisions but what I and I suppose everybody else finds is that this is a disability issue. I will be meeting both Ministers, Deputies Chambers and Donohoe, shortly in the next room and I will ask them the same question. We are five years talking about it and-----

I am fully supportive of the Deputy. If he can get them to bring it across the line, the disabled community and disabled citizens would welcome that. In doing that, the criteria for it needs to be completely and utterly reviewed and expanded. Sometimes, when we talk about disabled drivers, we think of the physically disabled. The criteria are too short. I did not realise that, at the same time, we also have a very narrow view of dwarfism. Regarding children who are neurodiverse and how complex and difficult it is for a family needing to access a primary medical cert, while the child has both limbs, thank God, and everything, it is very narrow on it. I am fully supportive. I have written many a letter on that.

On EmployAbility, I am a bit disappointed to hear that. To be fair, the EmployAbility and Ability programmes that are up and running are normally very good at getting people back into the workforce. If the Deputy wants to send me on the representations on that, we will certainly look at it. He might have a number of them. I do not know. I have not come across it before, but if I can be of any assistance, of course I will want to.

Regarding the CDNT and the international recruitment, the HSE has launched a targeted initiative aimed at health and social care graduates overseas. It has a relocation package as well to bring them back and get them set up. I do not have figures in front of me to say what it is, but that was done approximately 12 months ago.

How many have come back? Will it make an appreciable difference? This is probably not widely known by many people. Where is it being targeted? How is it being advertised? How do the people in the Australia, New Zealand, Canada or wherever know about it? Is it a follow-up of graduates? How is it being done?

It is being done two ways. There is HSE national recruitment and a targeting campaign that goes on all of the time on LinkedIn, targeting the Australian market and people who have gone to Canada, for example. Regarding CHO 1, my compliments to Edel Quinn, who did a bespoke targeting campaign last Christmas targeted at people coming home for Christmas. She basically targeted in Donegal on the local news and newspapers. She ran a Christmas campaign to see whether she could capture people who were coming home from the UK who had perhaps trained abroad. They could have trained in Northern Ireland or Scotland, for example. There might be a little tweak CORU would require. She was also able to provide that additional training piece and module that might be missing as well to attract and retain. There is good learning to be seen, and it is done in a bespoke way. In CHO 1, Ms Quinn is running sponsorship programmes. She is taking a number of different measures to attract staff. It is hard to attract staff into Donegal more than certain areas. She is taking leadership and showing how she can fill posts, and this is how she is doing it. She is having success.

It is also important to note what is happening in some of our disability CDNT leads. I am talking in particular about Stewarts Care on the east coast, of which Mr. Brendan O’Connor is the head. He worked with the CHO head of disability there on how they could target to recruit for and fill positions. When I talked to him recently, they had set a target of 97 and they were at 45 of a targeted campaign. That was in the charity voluntary sector and it was in CHO 7.

I have not heard anything back but we had a meeting in the past two months with the Minister, Deputy O’Brien, and his housing team to advocate for that piece. When we talk about supporting somebody coming out of a nursing home or stepping somebody out of the NRH, regrettably, €30,000 or €38,000 will not sort out that problem for us. If a person is putting a bedroom downstairs with a wet room and expanding the doorframes in a house that might have been built before there were standards for doorframes, that is more than €36,000. I have strongly advocated that the review should be a favourable review upwards.

I also think the guidance or circular that is issued to the local authorities from the Department is probably very tight in its wording. There has to be a space for exceptional need. We understand the definition of "exceptional need". An exceptional need is when somebody is ready for discharge from the NRH or somebody is in a bed when they could be home. That exceptional need is where they will not be able to afford to do it because of income capacity. It has to be balanced. At the end of the day, the State is paying for it all. We are either paying for the bed in the nursing home or we could pay for the refurbishment. We have to think about the person who would have a better outcome by returning home. That exceptional need will still come out of the one pot of the Department of public expenditure. There has to be a way of having those conversations.

To follow up on that, further to a letter from the committee about those grants that are under review, the Minister wrote a letter I will share with the committee over the next day or so. There is no need for the Minister of State to look at me so. There are a number of things. She said the section 39 organisations were paused in respect of the two sides coming together on it. It is crucially important that is brought to a conclusion. The Minister of State met with Rehab today and its representatives were previously in the audiovisual room, with all party and Oireachtas Members invited to the event. They talked about the number of staff vacancies they had. There is a real recruitment and retention issue. While I think there is an acceptance at Government level, it is important that is driven home again. While the talks are paused, it is important that anything that can be done on it at the Minister of State’s level needs to be done.

The Minister of State mentioned delivery. I refer to when a decision is made to fund something and when it actually becomes a facility. She and I spoke about a project for which people were looking for €50,000 and for which a commitment was given in January. There were then emails back to the project developer. We have lost the summer in terms of the service that could have been provided for kids and young people with disabilities. The HSE has gone to ground in the past six or seven weeks on a project that is costing €50,000, not €500,000 or €500 million. It reflects very poorly on the system that a decision was made in January and we are now in the second half of September and that project has still not been delivered.

Those who would have delivered it would have had it ready in two or three weeks, and it could have been used by people.

The Minister of State spoke about respite. Many of the section 38 and 39 organisations, urban and rural, are looking at the shortcomings or challenges for families and people with disabilities, and they are coming up with innovative ideas to move beyond and get facilities. We came up with the project of alternative respite because of the HIQA regulations and all the other regulations and hoops that have to be driven through. We met with officials from the HSE in the first week of February. While it was embraced, one could nearly see the officials looking at it and asking how they were going to pause this or how it was going to work, and saying it is a great project and a wonderful idea, and fair play to us for coming out with it, but out the door you go and that is that. One could feel that.

We really have to challenge the system when organisations, community groups or individuals go to Department. Section 38 and 39 organisations, be they private sector organisations or otherwise, are providing the services on behalf of the State. We have bemoaned at various levels in the Oireachtas over the years how the State set up services for health and education at different levels but that were not administered by the State. However, section 38 and 39 organisations were community organisations that came together because the need was not being met by the State.

Alternative respite is well worth looking at. Of course, the Minister of State will be glad to know that the Kanturk Meelaherragh project is moving forward. We are hoping that planning will be granted in the next few days, and we will be ready to go with it. I thank the Minister of State for the effort. She might reflect on the fact that we had to get her intervention to make sure that was funded. She knows and understands the importance of that project. She said it should be in every CHO. We had a Minister whose ears were open to the project and who understood and was passionate about it. If we did not have that access, this project would never have got off the ground. The system has to be better than that. We meet with officials and think we have them on board, but it needs to be better than that. It is almost as if, although the bright ideas are grand, they say, "That is great now, we will give them a clap on the back, but we have no intention of delivering it", until there is a crisis and an issue. If the Minister of State was to reflect on the past four and a half years, I am not sure how she would create a system that would react better. Perhaps she does not want to comment on it, but I would like her opinion.

Much work has been done on developing day centres in different locations over the last four years for people who are leaving full-time education and who are looking for day places. However, the biggest challenge now, and this is not within the Minister of State's Department, is for people going from primary school into second level. There is a real issue, which the Minister of State mentioned at the very start, whereby we have kids in July and August who do not know where they are going when they finish up in primary school. They or their parents have no idea where the next phase is going to be. Surely to God, we need to be moving that on. In the Minister of State's deliberations with the Ministers over the next few days, a discussion should be had about how carer's allowance should be care assessed instead of means tested. If a person is providing the care, it should be-----

I thank the Cathaoirleach. Absolutely, I will start there with the idea that respite should be championed. I will bring in Ms Andersson because she is a find within the Department. She understands respite and understands the alternative model. Sometimes you find people who can work with you, who get what you are doing and who know what you are talking about.

For anybody who did not realise, I went to visit Liskennett during Covid where we could be outdoors and do the 2-metre social distancing. I fell in love with the horses down in Liskennett and saw the value of the equine therapy piece. Yes, my ears were open to it, but I also learned there were alternative ways of doing it. Ms Andersson might share the ideas on the respite strategy we are about to launch.

Yes. The Minister of State has always been a big fan of alternative respite. In the Department, we take a very broad view of that term, which is nice to be able to do. There is an awful lot that fits under it. When we have given funding over the past couple of years, it has been very much emphasised that this is the area at which we are looking. We could give the Cathaoirleach examples of alternative respite projects that cost nothing and others that cost millions. There is an awful lot within that.

Looking at our spending for 2024 around respite, approximately two thirds of the proposals we are looking at are in the area of alternative respite. I would agree with the Cathaoirleach and Minister of State that this is a really important area because it is also an opportunity to provide life experiences; the regular life in regular places we talk about by providing things like after school clubs and clubs during the weekend and things like that, which all children enjoy.

At the moment, we are planning a respite stakeholder event. We are looking at and working on some kind of respite policy that will reflect this going forward. Alternative respite is going to be a big feature going forward. We still understand, of course, that a lot of parents and carers need overnight respite. It is not taking away from that in any way, shape or form; it is about broadening the provision rather than changing it.

It is also important to say that when we look at respite, it is a broad spectrum of approaches. Ms Andersson is right; the Saturday club can equally be as much of a relief to the family, but it is also important for young people to participate and have somewhere to go. If their sibling is going to whatever form of sport they participate in, that child would have his or her place to go to. We see what Rainbow Club Cork does on a Friday evening. It is also a teens club for neurodiverse children.

We can also look at where buildings are underutilised and perhaps the greater integration of that space for after school clubs. Parents are finding that last piece very difficult. They are able to participate in education, but then they are not able to finish out their working day and find themselves actually having to sacrifice their jobs to collect their children on time. That is some of the feedback we are getting.

Home sharing is another part of it. We actually do very well on the west coast where we have it because of the islands. People come in and want to go to the little blue teapot. They do their level 6 and home share and then go back to the islands on the boat on Friday evening. They partner up with families for two or three years while they come in. What they discover is that when they come in from the islands, some of them might want to stay on. We are looking at supported independent living.

There is much to be done within the respite piece. The policy document takes a broad look at it, but it is also about putting something in place with regard to the personalised budget and asking what the framework looks like and what kind of choice the CHO has. When a parent goes to a CHO and says they do not want overnight respite, but they would like their child to be able to access something like equine therapy, there should be one within each region if that is how they would like their child to spend his or her time. Personalised choice has to be given back to parents as opposed to just saying this is what is available and that is the choice. We need to change the dialogue a little in respect of it.

We are also going to launch a whole piece relating to the capital plan. We have capital plans in the HSE. We know that if you get on it and get moving, you get through it. Now, it might take forever, but we plan to have a five-step approach. People will know what step they are on. The difference is that when the planning comes, people should know the feasibility study and detailed design of the costing would mean the next piece is that funding would be ring-fenced. People should be given the seed funding, however.

Assistance should also be provided for doing the stakeholder assessment and it should not have to come out of the coffers of the organisation. This will allow other organisations, which might not have a big backroom team to support it, to come through and get on with having the design done, negotiating the planning process and have the funding support to allow them to operationalise matters and deliver on meeting people's needs.

I take the point with regard to equine services and other services. Some of the service providers were able to access facilities heretofore whereby they were able to take families away for weekends or for two or three nights and build equine and other services around people. One of the service providers is developing a project whereby it has acquired extra land and wants to develop some of its existing buildings so that families can come for two, three or four nights. These are families that may not be able to access holidays together because of the challenges with care needs or behaviour. These organisations want to build on what they were able to get on the open market heretofore. They have not been able to do so in the past two or three years. They want to build so that families can come for two or three nights.

Many campuses have built up a large number of facilities over the years, such as hydrotherapy pools, running tracks and various facilities. They close from 5 p.m. on Friday until 9 a.m. on Monday. We have these facilities already built and paid for through philanthropy or State funding. Places that have facilities for alternative respite should be used for families who, unfortunately, are not able to avail of any break during the summer or other times of the year. This needs to be supported in a major way through the Department and the State.

Absolutely. Some children love routine and crave it. If some of the campuses the Cathaoirleach spoke about, which have some wonderful facilities, were accessible and if we could build them into the routine of families, or build them into the opportunities available for personal assistants whereby they could bring an individual to them, this is what we need to be looking at. I compliment the Minister of State, Deputy Byrne, and his predecessor with responsibility for sport, Deputy Chambers, with regard to the sports capital fund. Disability had a 25% weighting in it and community had the rest. To be honest, when the Department with responsibility for sport looks at how sports capital funding is spent it looks to see how accessible and inclusive the community organisation is and how disability-proofed it is. It has gone from being just a letter of support to being a licensed service agreement. The licensed service agreement has a value, and organisations would not get funding unless they had entered into such an arrangement.

I have met a number of organisations that I would like to bring back to a few conversations on this. When disabled citizens ask for letters of support, they have currency because organisations would not be getting the funding without them. It is the same way in which without women and girls the organisations would not be getting the funding either. There is currency that needs to be leveraged, and rightly so, in the context of what the Cathaoirleach said. Disabled people and young people would like the slots from 7 p.m. to 8 p.m. in these organisations. It should not mean they get the slots as the light gets dim or the poor Sunday evening slot when everybody else is going home. We need to have real inclusion and real integration.

Earlier, I was asked to name a good Department. This is a classic example of a good Department that understands how we do inclusion and integration with the UNCRPD. It is delivering it through its framework for how sports capital funding is rolled out. We need to be using more of our facilities, most of which are paid for by the State.

I thank the Minister of State and the officials for their contributions. I thank them sincerely for being here with us today. The battle is ongoing and we wish the Minister of State the very best of luck when she takes on the Department of Public Expenditure, National Development Plan Delivery and Reform and the Department of Finance in the coming while. If she needs us to make any public statements I am sure the Government and Opposition members will be only too delighted to help out in the process.

I sincerely thank our members. We are back now, however long we will be here. We have a full line-up of work for the coming weeks. I also thank our team here which has done lot of work over the summer in preparing reports. They are absolutely excellent, and I thank them for it. We will adjourn until next Wednesday.