Maurice Quinlivan (Limerick City, Sinn Fein)
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We have received apologies from Deputies Healy and Quaide and Senator Bradley. The purpose of today's meeting is a discussion about progressing the delivery of disability policy and services. We will hear from disability rights campaigner, Cara Darmody, who recently held a 50-hour protest outside Leinster House over the delays in accessing assessments of need, AON, and services for young people with disabilities. She is a vocal advocate for her two younger brothers who are autistic. We will also hear from representatives from the Disabled Persons' Organisations, DPO, Network, which is an alliance of five national disabled persons' organisations in Ireland. They will discuss the need to see progress in the design and delivery of policy related to disabled peoples' lives in Ireland. On behalf of the committee, I extend a warm welcome to Ms Cara Darmody, her dad, Mr. Mark Darmody, and representatives from the DPO, Ms Lianne Quigley, Mr. John Sherwin and Mr. Damien Walsh.

I will read a note on privilege and housekeeping matters before we begin. 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 would be regarded as damaging to the good name of a person or entity. Therefore, if their statements are potentially defamatory in relation to an identifiable person or entity, they will be directed to discontinue their remarks. It is imperative they comply with such a direction that I may make.

Members attending remotely are reminded of the constitutional requirements that to participate in public meetings, members must be physically present within the confines of the Leinster House complex. This is due to the constitutional requirement that, to participate in public meetings, members must be physically present within the confines or place where Parliament has chosen to sit. In this regard, I ask any members participating via Microsoft Teams to confirm they are on the grounds of the Leinster House complex if they wish to contribute to the meeting.

I call Cara to make her opening statement.

Ms Cara Darmody:

I am the disability rights campaigner who performed a 50-hour protest on the dirty street outside three weeks ago. I am the campaigner who was credited by the previous Taoiseach for the allocation of €10 million of Government funding to what he calls “Cara’s Fund.”

My own story is very simple. I have two brothers: Neil, who is 12, and John, who is eight, who are both autistic and severely and profoundly intellectually disabled. They were both failed dramatically by the State regarding assessments and services. Neil currently remains in an inappropriate school place. Our story is the story of so many thousands of other families. I cannot do anything to change the permanent damage caused to Neil and John, but I can advocate to stop damage being done to autistic children in the future.

Let us cut straight to the chase. I am here today to call out the blatant assessments of need lawbreaking by the Taoiseach and the Government. Three different taoisigh have made promises to me to fix this issue, and all have dramatically failed. I wish to introduce my dad, Mark, who can offer important information about AONs and the recruitment of private providers, services and school places, including important suggestions that we recently made to the Taoiseach in our meeting with him.

Let me explain how the Government is breaking the law. The Disability Act 2005, an Act created by this House, states that an assessment of need must be carried out within six months, full stop. That six-month timeframe is there because every single person knows that early intervention is the key. It is also generally accepted that, when early intervention does not occur, damage is caused to children with disabilities. It is a no-brainer. Let us look at what is happening in Ireland right now. In 93% of cases, children are assessed outside that six-month timeframe. Let us call a spade a spade, the law is being systematically smashed by the Government. This is not a close call. The Opposition now believe that a change in the disability law is coming. The six-month timeframe to assess must not be changed. Let me be very clear: I will vigorously resist any negative change to that six-month timeframe as I believe it will cause further permanent damage to children.

Presently, there are more than 15,000 children left to rot on the HSE assessments of need waiting lists. Shockingly, the HSE revealed that the figure will go to more than 25,000 by Christmas, all because the Government is asleep at the wheel and acting in a non-emergency mode of action. No spin or political waffle can hide the truth of these figures. No advocate has been more respectful or kind to our Cabinet members than me. In fact, I really like every single one of them and I love meeting them but let us call a spade a spade. They are dramatically failing children with disabilities right now. Worse still, they are lawbreakers, and I am calling that out big time right here. The Cabinet is breaking the law; the Taoiseach is breaking the law. I get it that they do not want to hear that kind of criticism - I do - but it is the truth. They are lawbreakers when it comes to assessments of need. If they do not like that criticism, then here is my advice: stop breaking the law.

It is a sad indictment on our country that if one of the members asked me to find a location in Ireland where 100% of the people present are breaking a law of some type, then I would go to the Taoiseach’s Department on a Tuesday morning for the Cabinet meeting. That is shocking to say but it is true. Three weeks ago, I was so grateful to be invited to meet our Taoiseach during my protest, but I was shocked that he would not declare this as a national emergency. He is breaking the law. The HSE has now handed him direct evidence that this crisis is totally out of control, with figures to rise by more than 10,000 children over the next seven months. How many does that number have to reach before he declares this as a national emergency? Is it going to be 30,000, 40,000, 50,000?

His plans are all medium to long term but they will condemn those 25,000 children to permanent damage if he persists in this course of action. My question today for anyone who tries to defend this national crisis will be: what do you propose for the 15,000 children waiting right now?

Let us look at the Taoiseach’s own words. He said that they are “not in a position to uphold the law.” Seriously, could we imagine any citizen in this country being allowed to get away with such a statement? He also said: “It is a technical breach of the law.” Could someone please explain what that means? It is the most ludicrous thing I have ever heard. This is not a technical breach of the law like parking on double yellow lines; it is total and utter blatant law-breaking.

I am going to be blunt to the Taoiseach. His law-breaking is causing permanent damage to children with disabilities. He and his Cabinet need to wake up and show some initiative and urgency. Children are suffering permanent damage at their hands and their conduct needs to be called out.

We are an international embarrassment in how we treat children with autism and intellectual disabilities. How do I know this? I have already featured in an ARTE TV documentary that aired in France and Germany just last month, and I was also the sole keynote speaker at the huge Colin Farrell Foundation gala in Chicago last December. People were disgusted to hear how our Government treats children with disabilities. From this point on, I will be extremely vocal about this issue, both nationally and internationally until real change occurs.

Why do I believe that the Government is asleep at the wheel? It is because it is stuck in the captivity of negativity, which is an endless cycle of negative thinking that fails to remove barriers on the road to progress.

Everyday, we hear excuses like, "There’s no more capacity left in the private sector." If that is the case, can someone please explain how 37 psychologists wrote to me, unsolicited, since my protest in the last three weeks, just like this email I have offering immediate assessments for my brothers? My message to the Taoiseach today is very simple: he should immediately declare this as a national emergency, set up a task force to physically knock on every private psychologist and therapist’s door in the country with an emergency request for help, and dramatically finance Cara’s Fund, as the Tánaiste called it. Finally, Taoiseach, stop breaking the law. I thank everyone for listening.

Ms Lianne Quigley:

The DPO Network welcomes the opportunity to be here today. The DPO Network is an alliance of five national disabled persons’ organisations, DPOs, in Ireland who share values and an agreed set of principles to work together. Based on these shared values and principles we work together to help ensure that the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD, is fully implemented in Ireland. The five DPO member organisations are: AsIAm, Ireland’s national autism advocacy organisation; Disabled Women Ireland, DWI; Independent Living Movement Ireland, ILMI; Irish Deaf Society, IDS; and the National Platform of Self Advocates. Based on these shared values and principles and our commitment to the implementation of the UNCRPD, the DPO Network welcomes the opportunity to address the work of the joint committee in how we need to see progress on the design and delivery of policy relating to disabled persons lives in Ireland.

At its core, the UNCRPD acknowledges that DPOs represent disabled people on issues affecting them. Under Article 4.3, the convention states the State must actively involve both DPOs in how laws and policies are developed and how we need to be involved in the process.

The DPO Network views co-creation as the process that needs to underpin how the State works with DPOs, locally and nationally, into the future. We will soon publish our second position paper, Blueprint for Co-creation, where we will demonstrate what co-creation is and how it works. For this opening address we want to talk about co-creation as a process and how that has informed the new national disability strategy, but also how this now needs to be the benchmark for the process of policy development and implementation to bring about the inclusion of disabled people in Irish society.

Co-creation is an inclusive and collaborative process. It involves disabled people, their representative organisations the State and other stakeholders. They work together to develop, put in place, monitor and review policy and other actions. These policies and actions foster the meaningful inclusion and rights of disabled people in society. Co-creation is one way to achieve this change. It challenges existing decision processes by requiring equality among stakeholders. It shifts the balance of power between provider and recipient. Historically, the unbalance limited disabled people’s access to decision making. Co-creation also places a strong focus on the collective lived experience. At its core, co-creation is about bringing people together to engage as equals, in shaping shared values, goals and actions that lead to successful and impactful outcomes. When we work in partnership using co-creation disabled people and our representative organisations can bring a range of perspectives on policy issues. The co-creation process can enable the State and DPOs to develop a common understanding of issues that impact on disabled people who have one or more disabilities. Co-creation enables the State and DPOs to create safe, inclusive and accessible spaces for people to share and learn from one another. It enables the State and DPOs to build long-term relationships based on shared values, like a commitment to justice and equality. Co-creation enables the State and DPOs to foster creativity and innovation by engaging in new conversations with diverse groups. This leads to new ideas and knowledge.

The DPO Network played a central role in collaborating with the State, through the former Department of Children, Equality, Disability, Integration and Youth. They worked together to develop the National Human Rights Strategy for Disabled People 2025-2030. The aim of this strategy is to progress Ireland’s implementation of the UNCRPD. Those developing the strategy were guided by a strong commitment to the principle of stakeholder engagement. They recognised the vital role of stakeholders, particularly DPOs and disabled people with lived experience. This means that we were actively involved in putting the strategy in place and voicing the key issues and concerns affecting disabled people. Over a two-year period, representatives of the DPO Network collaborated with the Department to shape the new strategy. The co-creation process began with a partnership agreement in which both the Department and the DPO Network affirmed their commitment to the co-creation process. We as partners established realistic expectations and recognised our collective limitations in what we could or could not do. The collaboration also emphasised the equal value of all partners’ expertise. This diverse expertise fostered knowledge-sharing and was the foundation for generating new insights. New insights are a fundamental part of co-creation. The process continued through regular and meaningful engagement, including joint meetings between the State and the DPO Network. We at the DPO Network facilitated the active participation of its members in identifying needs and designing and reviewing policy themes and priority actions. All involved needed to learn how to put co-creation in place while developing the national human rights strategy for disabled people. It was a complex and demanding process for both State and the DPO Network.

Members of the DPO Network are with officials from the Department of Children, Disability and Equality in New York today presenting at the CRPD Conference of State Parties to present this co-creation process as a model of best practice not only in Ireland but internationally.

Post UNCRPD ratification, we can all agree that the landscape has fundamentally altered and the emergence of DPOs as collective autonomous spaces has and will continue an upward trend from disabled people being often passively consulted towards disabled people in our authentic collective spaces co-creating systems and structures that will realise the UNCRPD. We have emerging, confident disabled persons' organisations, including DPO Network members, who are committed to utilising our expertise to co-create policies, systems and structures that will progressively realise the UNCRPD.

For co-creation to work we need to invest and resource DPOs. DPOs will need resources and time to develop our own analysis, and vision and values of how we will work, and often that requires resources. That is a key learning of the process. DPOs need resources from ISL translation, to support staff, to policy workers to community development workers. When we think of a co-creation process, our partners in DCDE have access to resources: staff to organise meetings, to prepare and read materials and to engage with other Departments. People’s time needs to be resourced. DPOs are the same. We need staffing costs and reasonable accommodation, and with that we can thrive but it takes time. DPOs are relatively new in Ireland.

The work we carried out as the DPO Network demonstrates that with investment, disabled people are effective at managing and controlling organisations, about employing and supporting staff to carry out key tasks and supporting our members to make collective decisions to bring about inclusion. The national disability strategy co-creation process shows the benefit of that investment. We cannot go back to a system of endless consultation or individual disabled people on committees without mandates. That approach does not work. It does not work for disabled people as a collective or for policymakers. If we want to make the UNCPRD a reality in our lives, we need to recognise the role of DPOs and resource them.

We understand that the remit of this committee is to consider all disability matters, including monitoring the implementation of the UNCRPD. However, in the spirit of co-creation, we would like to invite the committee to meet with DPOs to discuss priority issues and how much time it will allocate to each of these priorities for the year ahead. This forward planning will support our effective participation.

Further, to support this committee being as effective as possible, we as a network wish to explore whether there is scope to co-create how best the UNCRPD can be at the core of this committee’s work, whether DPOs and elected representatives can find the time to develop an agreed understanding of language, of how we view disability and whether the committee really can, or should, consider all disability matters as opposed to developing a process that is about the UNCRPD and its full implementation.

Co-creation as a process could inform the work of the committee on implementation of the UNCRPD, the need for legislative review and accountability about budgets and progress for inclusion in Ireland, which could lead to a consistent focus on the systems change that is needed for disabled people to live our lives as equals in an accessible, inclusive and equal Ireland.

Maurice Quinlivan (Limerick City, Sinn Fein)
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I thank Ms Quigley for her contribution. I invite members of the committee to put their questions. I ask that when I call members to speak, they adhere to the agenda and the items scheduled for discussion. I am going to call members from the speaking rota we have agreed to, so all members will get an opportunity to speak. Members have six minutes per round, and they can come back in again later on if they wish to do that. I call Deputy Ruairí Ó Murchú.

Ruairí Ó Murchú (Louth, Sinn Fein)
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I welcome everyone. On some level, it is always unfortunate that we have to address the issues that are being addressed. The one time everyone might agree with me is in commending Ms Darmody on the huge work and service she has done to her brothers and all the other Neils and Johns who are out there, of which there are a huge number. Ms Darmody said it herself: what we are looking at is failure here. We are talking about 15,000 being failed with regard to the assessment of need long before we talk about the failure to get therapies. We all know the impact of not having those early interventions. We could be looking at a figure of 24,796 by the end of the year, which is an abject failure.

Ms Darmody met with the Taoiseach and, first and foremost, put it to him that this is breaking the law. She wants to see that stop and the State following up on its obligations. What we are looking at is 530 positions unfilled at the minute in the CDNTs. My fear is that even if all those positions were filled, we still would not have the capacity to deliver on both assessments and therapies. Did the Taoiseach speak about any engagement there had been? I know when I was a member of the autism committee, we met with the IASLT, the AOTI and the PSI. They all said nobody had a conversation with regard to what even was the best means of carrying out assessments. I have no problem if we have bespoke means of doing that, underpinned by evidence and the professionals.

Was there any detail given with regard to finding a better way of delivering assessments and therapies, and any promises beyond, or was it what we are all listening to, which looks like just changing the law to remove the embarrassment of the Government breaking the law?

Mr. Mark Darmody:

I might come in because there are a lot of technical issues there. Let us talk about the pace things are going at. We now know that with regard to pace, it is a Titanic waiting to happen, where 10,000 extra are going to go on that list. That is not us saying it or anyone else speculating; that is now coming from the HSE. We are talking about a serious Titanic by Christmas time.

What shocked me is that the Taoiseach does not buy into this urgency and national emergency. We sat opposite him. He just did not buy into that aspect, and said it is only words. Cara said it to me afterwards that he is basically saying that using the words "national emergency" is only using physical words. The problem with that is, imagine going home to your child tonight and it is their birthday, as Cara said, and you say to them, "I am not going to wish you a happy birthday. It is only words; it does not really matter". It would not even wash in your own house.

I got into him about the private assessments and things like that, and about capacity. He conceded 100% that they have not knocked on the doors. I said to him that when it is put out there by the HSE and the Government that we have reached capacity in private capacity and that we have not even knocked on people's doors, he conceded that. To be fair to him, he actually took on board-----

Ruairí Ó Murchú (Louth, Sinn Fein)
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So we have not knocked on people's doors on private capacity. The other question I want to follow up on relates to school-based therapies, which the Taoiseach keeps talking about and we all want to see. Is there any detail with regard to a timeline in delivering that across the board?

Mr. Mark Darmody:

No. It is exactly what he said in the Dáil yesterday, which is that they intend to roll it out in special schools but it was in special schools before. They were stripped to the bone. Without criticising him, he is trying to sell it as something new. It causes great offence in the disability community every time he says we have a pilot programme. It is not a pilot programme. It was there before, and with regard to the people who he is selling that to, their children have been damaged by these things. I am very concerned that nobody has actually knocked on the doors of psychologists or therapists to say to them that this is a time of emergency and we need their help.

Cara said we had 37 emails in the past two weeks. Our children do not need assessments, yet we have unsolicited psychologists saying, "We can assess the two of them. We think you are waiting for an AON".

Ruairí Ó Murchú (Louth, Sinn Fein)
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Schools will still demand them and all the rest, no matter what.

Mr. Mark Darmody:

Let us imagine if the Government knocked on the doors of those 37 and said that this is the type of emergency we need them for.

How many would they make available? As I said to them, they have never asked somebody to work a Saturday or Sunday. In a time of emergency like Covid, people came out of the woodwork to do so many different things. They are not doing that. That is why it is so important to declare an emergency mode. Right now, we are sleepwalking into a disaster. There is no other word for this.

Cara talks about the breaking of the law. Let us be honest. Parking on double yellow lines does not permanently damage somebody. Unfortunately, the Cabinet’s present position and course are leading to the undisputed permanent damage of children. It is just not acceptable. Like Cara said, what number do we have to reach before the Taoiseach wakes up and activates this as some type of emergency? What will it take?

I saw something different. It might be just an unofficial policy. Cara protested last year and not one single Government TD or Senator came out. This time, 55 was the number I counted who came out to not just issue support but to tell us that they agreed with the fundamental argument she was making. Unfortunately, however, when we went into the Taoiseach’s office, he had a slightly different opinion as to what even his own Members seemed to have.

Keira Keogh (Mayo, Fine Gael)
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I thank all our guests for attending. I commend Cara not just on her recent efforts but her fight in general for her two brothers and all of the other children who are affected. I spoke to her dad outside Leinster House and explained that my background was in working with neurodiverse children and their families, so I am very aware of the struggles. I would love to hear her thoughts today.

We have this wave coming in what is already a huge problem. Looking at the children on the assessment of need list who will be permanently damaged and those who will not, is there a way we might be able to make a priority list on the waiting list? What I mean by that is some children are already within schools who are waiting for assessments of need but are accessing supports for perceived dyslexia, and people are already getting SNA and SET hours and engaging with NEPS while others waiting for assessments of need need an autism diagnosis to get into an autism class or special school. There were changes a number of years ago where the Government recognised that we were way behind on assessments of need, so we provide services before we get a diagnosis in some areas, and there are other cases where you need that diagnosis to get into an autism class or a special school. What is the witnesses’ thinking on prioritising the assessment of need waiting list for children who are currently not accessing services because of their delays?

Mr. Mark Darmody:

I will come in again because that is very technical. Let us talk about the reality. The parent applies for the assessment of need. Where we are from in Tipperary, that takes 48 months, so straight away, parents have to put that to one side like it is not going on. Eventually, there will be a knock on their door. Now they have to get a private psychologist to get their child into a school. That is the reality of what is going on.

I will give a simple example of what is wrong. In both our sons’ cases, the HSE paid for that private assessment. I have brought this previously to the Oireachtas Members here. It is so wrong that there is one rule for the Darmodys' two children and everyone else has to pay for a private assessment.

Keira Keogh (Mayo, Fine Gael)
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Can I stop for a minute?

Mr. Mark Darmody:

Sure.

Keira Keogh (Mayo, Fine Gael)
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I want to get Mr. Darmody’s thoughts on this. Let us say I have a child who has perceived dyslexia, a sensory processing disorder or ADHD and, at the moment, my child can access services based on that potential diagnosis. There are also two-year-olds who might need to access home tuition or an autism class and they will need the diagnosis to access that service. Would Mr. Darmody be in favour of prioritising the assessment of need list based on those who are currently not accessing services because they do not have their diagnoses?

Mr. Mark Darmody:

That is a legislative matter. The AON has to take priority because it is the law for that to take priority. It would take a change of legislation for anything different to happen. They have started recruiting for the service. My understanding, to be fair to the Government, is that there is a great pick-up and they have got lots of applications. However, the CDNT is toxic, so it is like a car crash. Deputy Ardagh said yesterday in the Dáil that the CDNT model was broken, so why are we persisting with it? The problem I have is I know we will be here next year. When the Taoiseach hears his own Deputy standing up and telling him that, we know there will not be any action from it. It should be a wake-up moment that his own are telling him this is broken. The answer is there. The system is 100% broken with the CDNTs.

The AON has to be done by the law, but now we are not doing that, so we are breaking the law. The optics for anyone looking in on this are terrible as well. That is the bottom line. Extra staff will be needed. The Taoiseach has conceded that. More than 4,000 psychologists are working away every single day in this country and no one has knocked on the door and said, “This is an emergency and I need you now.”

Keira Keogh (Mayo, Fine Gael)
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I am running out of time. I definitely knocked on doors in Mayo and there was no availability, but that might be different around the country.

I will go to Ms Quigley, if I have time. I appreciated her presentation. I will turn to dignity in some of the assessments for disabled people. For example, with the primary medical certificate, if someone needs an augmented car, he or she has to walk from one side of the room to the other to prove it. Will Ms Quigley give any other tangible examples of lived experience where engaging with Departments to look for the likes of a primary medical certificate is uncomfortable? It lies with the Department of Finance rather than the Department that deals with disability.

Mr. Damien Walsh:

In the broader terms of engaging with disabled people through disabled persons organisations, we are talking a lot about assessment and we will inevitably talk about the Disability Act because it frames much of that discussion. It is worth recognising that came out of the commission for people with disabilities in 1993 and a time for equality in 1995, which recognised that where Ireland was at then was sheltered workshops, segregated education and zero opportunities for disabled people in employment. The 2005 Act was seen as reasonably progressive because it not only looked at assessment, but also targets for recruitment of disabled people into employment. However, it is 20 years old and post ratification of the CRPD. This bit is important. There are elements of it that do not sit with where we are at now, so we need to review it in its totality. If we look at the definition of "disability" under the Act, it states it is a person who has “a substantial restriction in the capacity ... to carry on a profession, business or occupation in the State or to participate in social or cultural life in the State by reason of an enduring physical, sensory, mental health or intellectual impairment". It is an old-style medical analysis of disability, that being, what people lack.

The CRPD is where we are at now. It defines "disability" as persons who have a “long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others”. We have ratified the CRPD, so we are talking about what the systemic barriers that prohibit people’s participation in education, employment and social life are. Let us take the education element and the Deputy’s point. It is a mainstream-first approach for CRPD. How do we make inclusive education a reality? What are the supports children need? Education is not just about a qualification. It is about participating in one's community with one's siblings. It is about normalising impairment as part of the human condition and recognising some people will need additional supports within the education system. We have a system that does not work for disabled people. It does not work for the system itself because we end up in legislative conversations that were brought to the High Court – people are bringing cases to the High Court – as opposed to how we resource inclusion and the CRPD. That has to be the fundamental conversation for this House going forward.

Maurice Quinlivan (Limerick City, Sinn Fein)
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We will move to Senator Harmon, followed by Deputy McAuliffe, who is joining us online.

Laura Harmon (Labour)
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I thank all the guests for attending. It was illuminating hearing their contributions and having this discussion. I thank Cara for all of her advocacy and campaigning. Her protest highlighted this to many people in the corridors of power in Leinster House. It is important that action be taken and that there are not just empty words. I wholeheartedly agree with her that what is happening is unacceptable.

There is a commitment in the Disability Act that people are entitled to an assessment of need within six months. Therefore, the Government is presiding over a backlog that is not only damaging but also illegal. It is shocking that there are more than 15,000 people waiting for assessments of need in this country, and that is set to rise to 25,000 by the end of the year.

These are not just statistics; these are individuals who will have long-term effects from this and families that are being affected. We need to take action and take this seriously. As you say, it is a national emergency and an embarrassment internationally as well for Ireland. Ms Darmody stated that 37 psychologists have reached out to her unsolicited offering their support and that these people have not been asked to help. For the record, can Cara and Mark Darmody confirm that when they met the Taoiseach, he said that they did not reach out to any professional providers to assist with this? Did he give any commitment that such engagement would take place in the future? Did he commit to any follow-up engagement or promises with them? Also, I just wanted to know if Cara and Mark Darmody have had much engagement with the Minister and her Department and if they found that the Department has listened to them in relation to their campaign.

Ms Cara Darmody:

First, I can confirm that for the Senator. I can also confirm that the Taoiseach did not make any other further promises during the meeting, that he could not declare this as a national emergency and that I told him that is what needs to be done because there are children being permanently damaged. While I do not doubt for a second that the Taoiseach might want to do something with us, and while I might not doubt his sincerity and I know that he is a good person, unfortunately he was not able to commit to anything. He was not able to commit to making change. He openly said that the HSE is not really in the place to follow the law right now.

It is crazy that the Taoiseach does not see this as a national disgrace and that he just is not able to see that this is like the Titanic in that the numbers will rise by over 10,000 by the end of the year. I told the Taoiseach that in the meeting. I said that this is going down like a lead balloon, that it is only going down one way and that he needs to do something about this. Not only is this a national crisis, but it is an international embarrassment as well. He could not recognise the fact that we need to do something about this. I told him that it was a national disgrace and he just kind of bluffed it off. He just started going on about statistics and figures and this number and that number but there was no action confirmed and he could not say it was a national disgrace. He did not say he was going to do anything about the issue which makes me determined to keep on fighting for those who cannot fight back for themselves.

I have received support from so many TDs, Senators and Ministers and I have received so much support from the public. Everyone says I am right, even the Taoiseach and his predecessors. They say that I am all right and that just getting change is the big problem here. I get on well with all of them. They all say I am right to be doing this. It is unfortunate that I have to be up here doing this - for example, with my protest three weeks ago - because the Government is not able to do the job it is being paid to do. I will keep on protesting and fighting until I get what I want and until those who are being permanently damaged can finally get the services and the assessments of need they deserve.

Mr. Mark Darmody:

Can I come in for 20 seconds there? Two things stood out for me. The first was when the Taoiseach said to Cara that it is only a technical breach of the law. As Cara said in her opening statement, that was some moment. He does not see this as a big deal at all. When the Taoiseach of the country is not seeing this as a big deal, that is your problem. Every Deputy in the House knows there is a problem. He seems to be on his own on this one.

The second thing that stood out was when Cara asked the Taoiseach a very simple question. She told him that she had spoken to three different taoisigh, including himself, and that they had said they were going to do this and do that, but they never did a thing. She asked why what the Taoiseach was telling her that day was different. The answer she was given was that a subcommittee on disability had been set up. I said to the Taoiseach that a year had passed since it was set up. That was the answer. That is why. Even though the Taoiseach has a document saying that we are going to 25,000, he has a subcommittee on disability with people who will tell him what he wants to hear. It was such a farce of an answer. I am sorry to say "farce", but there is no other word.

Laura Harmon (Labour)
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As a follow-up from that question, what are Ms Darmody's next steps in her own advocacy? She has made clear her asks today. I suppose one of them is, as she mentioned, a task force. In terms of this committee here and us as public representatives, what does Ms Darmody want us to do after today in relation to this? I think they have already outlined that, but for the record, what is Ms Darmody asking us to do as a committee following her presentation today?

Ms Cara Darmody:

I already mentioned at the end of my speech multiple things that I want them to do. I am glad to be able to speak in front of the committee. That is the first step - to be able to get my message out here. That is very important to me.

There are a couple of things that I have told the Ministers and the TDs that I want them to do. I will read those out for the Senator. The first thing I am asking for is for the Government to declare this as a national emergency for children. Obviously, I know that speaking in front of this committee will being a lot of awareness to that. I will keep on fighting until I get what I want. The Government needs to treat this like the house is on fire. By speaking in front of this committee, it is another opportunity for me to be able to get my message out there that this is a national crisis and it needs to be treated. The second thing I am asking for is to allocate immediate and additional funding to Cara's fund because that is the ultimate blueprint to success, given that Simon Harris directly credited me with €10 million worth of Government funding previously. In light of the fact that recruitment and potential changes to the law are often cited as big barriers, I am thirdly asking for the creation of a task force to examine and remove any possible obstacles that exist. That is a very important one because the Government is making excuses for everything and that needs to stop. The final thing I am asking for is for a very specific financial allocation to be made towards the backlog of services, such as SLT, physio or OT, similar to the October 2024 allocation of €10 million given to Cara's fund. That is very important. By speaking in front of this committee, I will get the message out here today that those are my asks, and they will be my asks until I get what I want. I will not be going away any time soon because, right now, children in this country are being permanently damaged and that needs to change.

Gillian Toole (Meath East, Independent)
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I thank everybody for coming in to meet with us, and their support team as well, and thank them for their briefing notes in advance.

I have a couple of updates that I can share. Maybe it is information that Cara and Mark Darmody may have had already. It by no means diminishes the urgency of and the impatience for what is required for children but in terms of the practicalities of the National Council for Special Education making contact with schools to determine what services children will need, that has been brought forward and that process will occur earlier in the year, again, this year. In terms of graduates - as Ms Darmody knows, in order to provide the services we need more speech and language therapists, more occupational therapists, more SNAs and more SENOs - there will be more graduate places coming on stream from this September. However, that is not enough, and it is not soon enough because the term will be three, four or five years to graduation.

In terms of what can be done in the short term, I agree with Mr. Darmody's point about pilot schemes. There have been many excellent pilot schemes that the HSE has run, such as Talking Buddies and Tiny Talk, over the years. They need to be taken off the shelf, provided to schools and provided to early years providers where work can be done, possibly using digital means whereby parents can access them. There is one occupational therapy programme which can be accessed online for free. It is a collaboration between the University of Limerick and the occupational therapists so, if a parent has concerns about a child's movement, they can query dyspraxia but by no means diagnose it. It is to pull all of the things that are available, such as the Enable Ireland YouTube channel, together into a tool kit that within a couple of months could be accessible to parents, early years providers and schools.

To clarify, I will be devil's advocate in terms of the law being the law and who is responsible for implementing it.

Responsibility for disability services rests with the HSE. I am not for one minute passing the buck or otherwise but in terms of resourcing there is a need to consider why there is a shortage of staff and why people are leaving. I take Ms Darmody's point about accessibility and the 37 psychologists who contacted her offering their services. In my area of County Meath there are very long waiting lists. If people are in a position to pay privately they can go the private route and the list can be shortened. In some cases, the same people can provide that service so there are difficulties and differences in that process.

In terms of the AON itself, I understand that it is required to access a special school but not to access services. The latter comes about through general practice, public health nurses and referrals. What can we do in the community that could happen in the next two to three months? I will give a couple of examples of what we will try to do tomorrow night with a small group parents in County Meath. I have an occupational therapist coming; a primary teacher who practises well-being and will help with dysregulation. It is a forum for parents to come together to tell me what they need and for people to network and say who in the community is available. We will try to put a series of workshops together. These are practical things we hope will help parents while college places come onstream and we try to link the education and training boards, which have introductory courses for school leavers, with Enable Ireland for work experience. How have interactions with the HSE gone? I have no clue how much time I have left.

Maurice Quinlivan (Limerick City, Sinn Fein)
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The Deputy has one minute left so if she wants to put questions she should ask them now.

Gillian Toole (Meath East, Independent)
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My question was for Ms Quigley as well. I thank her for the briefing on the DPO Network. My question is about co-creation and the lived experience and the importance of that. I know we have gone through our work programme for the year and how we will possibly change it - I think we need to do so - in terms of the co-creation piece but I am possibly speaking out of turn.

Maurice Quinlivan (Limerick City, Sinn Fein)
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Does the Deputy want to ask Ms Quigley a specific question? That would be great. If the Deputy wants to change the work programme, we can look at that.

Gillian Toole (Meath East, Independent)
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I was thinking that I would use my time to finish speaking and then allow the guests to respond.

Maurice Quinlivan (Limerick City, Sinn Fein)
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No, the Deputy has six minutes in total.

Gillian Toole (Meath East, Independent)
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I will shut up then. I ask the witnesses to respond on the question on co-creation. I would absolutely be in favour of meeting the other DPOs, but I am one member of a team here.

Ms Lianne Quigley:

The DPO Network would really like the opportunity to be able to meet and discuss the best possible way to include the co-creation process. The Department of Children, Disability and Equality is creating its new strategy on disability and it is very important we include those with lived experience, such as myself. I represent the Irish Deaf Society and am a deaf person but these are other members of the DPO who represent other lived experiences and it is very important this kind of experience is included in the process. Does anyone else from the DPO Network want to add anything?

Mr. John Sherwin:

The level of awareness in Government of the value of co-creation is very low. A symptom of that, as was just mentioned, is that this committee has already established an agenda for the year and that discussion has not involved disabled people. Disabled people are the ones who can see what the priorities are and who can support the Government to make sure actions are effective. To answer Senator Harmon's question on what we want the committee to do next, we would like to be at the table with the committee while developing the agenda in order that together we can create that agenda of priorities and then talk about how to address them. Disabled people were not around the table when the agenda for the work of this committee, which is focused on disability matters, was being created. That is not so much a criticism as a call for action. This is something that can be addressed and maybe that will be the next item on the agenda for the committee.

Maurice Quinlivan (Limerick City, Sinn Fein)
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In the DPO Network's opening statement there was a request for that. It will be considered by the committee and we will come back to Mr. Sherwin on that. The next speaker is Senator Murphy O'Mahony.

Margaret Murphy O'Mahony (Fianna Fail)
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I will start with Cara and her dad. I want to say very clearly that Cara is extraordinary. Her advocacy and honesty and her love for her brothers Neil and John are just palpable. She is a complete inspiration. I think of myself at her age. My God, she would have run rings around me, so well done. Age does not matter when it comes to important issues. Ms Darmody has spoken for many thousands of people spanning many age groups and she deserves our thanks. To pare things back, in Ms Darmody's own words, what would her ideal assessment of need process be? If she had a magic wand, what would that process be? How could we get to that stage? If Ms Darmody was back again, would she do it all again? Would she go down this road? Is she pleased with what has happened so far in regard to her lobbying and fighting?

Ms Cara Darmody:

My dream in life would be that the Government would stop breaking the law, that it would assess children within the legal six-month limit and that the children would not be rotting on a waiting list for five to six years. That is the big aim here - that the Government would stop allowing the HSE to break the law and systematically smash the law and that these children would not rot on waiting lists any more. There would not be any permanent damage caused to children, their email would be responded to within the three months of application and the child would be assessed within six months.

I have spent the past two or three years campaigning for disabled people who cannot fight back for themselves, and it has been some journey. I would absolutely go back and do it again because the best thing I have ever done was getting involved in this. Since around the age of six I have always got a little bit of joy and happiness from helping other people and being able to help other people, especially when I got the €10 million worth of Government funding last October and nearly 3,500 children got an assessment of need and were not rotting on a waiting list any more because of that. While it is only a small drop in the ocean, I am so happy to be able to make a difference and to be able to try to help as many people as I can. The dream is that the Government would stop breaking the law, would comply within the six months and that kids who cannot fight back for themselves would no longer have to be rotting on a waiting list and that they would be treated not as second class citizens but like any other citizen in Ireland.

My two brothers and I live in the same country called Ireland but we live in two very different places at the same time. I have loads of friends and play loads of sports and everything is laid out for me. I am just a normal 14-year-old with a great life ahead but my two brothers, Neil and John, get treated like second-class citizens and are rotting away. It is so hard to watch and it is all just because they have a disability, and that needs to end. Disabled people can no longer be treated differently. They need to be assessed and should not be left to rot on the waiting list. It is so wrong and it gives me determination every single day to come up here and fight not just for my brothers but for the thousands of children and families who are too scared to speak up to the Government or who cannot speak up.

Margaret Murphy O'Mahony (Fianna Fail)
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Thank you, Cara.

I thank the DPO Network for coming in. It is great to see five organisations working together. It is a fantastic idea. They have similar aims but are coming from different backgrounds and are sharing and combining ideas. Well done to them. I would like to acknowledge the critical insight shared in the opening statement. Co-creation definitely requires investment.

It is not an abstract value. It is practice-dependent on infrastructure, time and resources. The need for sustainable funding for a DPO, staff, Irish Sign Language, translation, policy capacity and reasonable accommodations is urgent and valid. I would be happy to meet the representatives again. They made a great point that we should have involved stakeholders more when we were planning our work agenda. It is definitely a lesson learned for me. It is something that just did not dawn on me. I worked with people with disabilities in another life so I know what is going on, but we certainly should have involved stakeholders more. That is a great idea. Apologies from me.

I have a few questions. What legislative changes would the witnesses' network like to see in the coming years to better support disabled people? In their experience, how has the lived reality of disabled people changed in Ireland over the past decade? How can the committee work with them to ensure that real changes happen? Given their extensive experience in disability advocacy and their work, what specific recommendations would they make to ensure successful implementation of a new national disability inclusion strategy? How can we ensure it is effectively actioned and monitored and delivers real impact for disabled people in Ireland?

Mr. John Sherwin:

I will respond on effective implementation. We are currently in meetings with the Department of Children, Disability and Equality about the structures of engagement. It is still of the moment. We will work through a process of providing guidance, from our perspective, about what type of engagement will work in terms of implementation and monitoring. This committee certainly has a role in that because it gives us a voice around the table. What is not clear, and could become clearer to us through an engagement on the agenda of the committee, relates to what happens after testimony is delivered here. If we have a strategic thought about how DPOs work with this committee, with a role of monitoring not only the implementation of the national disability strategy but the CRPD in general, and have a shared strategy around that, then this committee becomes more effective in what it can do next. We had some great interactions with the previous committee and prepared submissions and opening statements, but what is lacking is a strategy about what happens next. We need the committee's support and the committee needs our support on that. We would welcome being able to come together on that.

Mr. Walsh may have some comments on the Acts.

Mr. Damien Walsh:

I again point out that the Disability Act needs to be reviewed. Section 10(2)(b) of the Irish Human Rights and Equality Commission Act 2014 provides for IHREC to review not only pending legislation, but also existing legislation from an equality and human rights perspective. We can admit that the Disability Act, particularly sections 8 and 9, does not work. We now have this situation where we have extensive waiting lists. To go back to Deputy Keogh's question, we are almost asking which we prioritise.

We also need to reflect on this: disabled children become disabled adults. We need to create a conversation where disabled adults are empowered through their DPOs to inform that policy perspective. I know that, being accountable to our members, language such as "permanently damaged" is being used but we need to be talking about systems and support. Nobody is damaged. We need to talk about the opportunities to be involved in education and in our communities. We need to be careful. The Disability Act takes a medicalised approach. It even uses the term, in respect of assessment of need, "to ameliorate the disability." It is going back to cure and care. It is totally outdated.

What are we assessing here? When the Act was raised at the forum on disabilities - disabled people had issues even then around the assessment of need - we said this should be about transition points. What are the supports young disabled people will need when they go into and come out of education? It is about those supports as opposed to the real danger of driving clinical assessment at an early age, where what is said is, "This is who you are now". That ignores the fact, when we talk to disabled adults, that the opportunities are there when the systems are put in place. That is unlike what the Act stated 20 years ago, which stated they could not be employed and could not participate in social and cultural life. They can and do but it is about empowering and enabling that participation, not going back to putting people into a clinical diagnostic box.

Maurice Quinlivan (Limerick City, Sinn Fein)
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The Senator is way over time.

Margaret Murphy O'Mahony (Fianna Fail)
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I will just say that the importance of working together has shone its light today. I thank the witnesses.

Maurice Quinlivan (Limerick City, Sinn Fein)
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Senator Clonan is next, followed by Deputy McAuliffe. They have six minutes each.

Tom Clonan (Independent)
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I thank the representatives for attending. I apologise that I was not here earlier. I am on the health committee, which, unfortunately, is on at exactly the same time. I was watching on the screen so I could see people speak. Ms Darmody and Mr. Darmody's pathway is not unlike mine in terms of my family's lived experience of disability.

I have a couple of questions. I do not mean to be rude, but do the witnesses know there is not a disabled person on the committee? If so, how do they know that? Are they certain there is no disabled person-----

Maurice Quinlivan (Limerick City, Sinn Fein)
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Without going into people's private issues, there are disabled people on this committee.

Tom Clonan (Independent)
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I know, but it was put to the committee that no disabled person was consulted.

Maurice Quinlivan (Limerick City, Sinn Fein)
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Sorry.

Tom Clonan (Independent)
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I am making the point how do they know-----

Mr. Damien Walsh:

That was about the DPOs, not individuals. It is the collective.

Tom Clonan (Independent)
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I ask the witnesses to hold that thought. It will frame some of the questions I have.

Mr. Darmody commented on his and Ms Darmody's meeting with the Taoiseach, who is supposed to represent all of us. They were puzzled at his lack of alacrity regarding the crisis we all find ourselves in and asked themselves why. I spoke to a previous Taoiseach about the situation of disabled citizens and the lived experience of disability in Ireland being abject. His response was that he could give no commitment to me that he would provide supports for disabled citizens because he felt it was an issue for the family. There is a very conservative, ideological orientation among a lot of senior decision-makers in Ireland who see disabled citizens as having less human value and as being the primary, if not exclusive, responsibility of the family. It is for historical reasons. I cannot really put my finger on it. Do the witnesses feel that Ireland is an ableist State that operates a system of apartheid for disabled citizens in every aspect of their intersection and access points to the social, economic, educational, cultural, political and artistic life of the State? Are we an ableist State?

It strikes me that our community is very fractured. Why is that? We should be the most powerful lobby group in the State. For example, and I do not know whether this has happened to Mr. Darmody, but it has been put to me that I should not speak to the lived experience of disability. It has been put to me that, as a parent, I should not speak to the lived experience of disability. Do the representatives accept, under the provisions of the UNCRPD, that not only do parents and carers have a right to speak to the lived experience of disability, they are actually mandated under the UNCRPD to do so? I also ask them to offer any thoughts they might have on why our community is so fractured and why there is so much infighting and conflict, which fundamentally gets in the way of us achieving what I imagine are our shared goals.

I agree that the medical model is outdated. Does Ireland even meet the criteria of the medical model? I received a secret report this morning that CHI had been suppressing. It shows clearly that between five and 80 disabled boys have become infertile due to a lack of urological intervention. That is sterilisation. That has been done on the watch of CHI. These are issues I raised on the floor of the Seanad last year. The Minister has been aware of this. We are a State that allows disabled children to become inoperable on the spinal list, and now infertile. Disabled boys have become infertile.

Is that not an international scandal? We do not even meet the criteria of the medical model, never mind the social model. What are the witnesses' thoughts are on that?

We are all in this space in various ways. Do the witnesses think our objective circumstances are getting better or worse in the context of regard to the lived experience of disabled citizens in Ireland?

Maurice Quinlivan (Limerick City, Sinn Fein)
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Who wants to answer those questions?

Mr. Mark Darmody:

May I share the time? Cara's campaign jersey said-----

Maurice Quinlivan (Limerick City, Sinn Fein)
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Sorry, Mr. Darmody. Ms Quigley wants to come in. She raised her hand first.

Mr. Mark Darmody:

Sorry.

Ms Lianne Quigley:

My colleagues can come in on this as well if they like. When we look at society from an ableist perspective, and as Mr. Sherwin mentioned, we really should look at how we include disabled people on an equal basis and make sure they are included in things that happen in everyday life, such as communication and conversation. From my experience as a deaf person, when it comes to wanting to work together to have a shared aim, a shared focus and a shared objective, not to exclude people at all but really to focus on the collective working together, it is important that disabled people themselves can work with one another along with parents and carers as a collective, with everyone involved. There is the element of life experience, but there are also plenty of instances of people who are involved in their lives every day such that there is an element that needs to be included to work together on. Within Ireland, when it comes to disabled people and disabled people's organisations, much of it depends on voluntary time. There are not a lot of resources when it comes to actually resourcing these organisations and this advocacy. It is all based on voluntarism and people voluntarily giving of their time.

I will ask Mr. Sherwin or Mr. Walsh to add a little more on this topic. I will pass over to them now.

Mr. Damien Walsh:

Senator Clonan's second point is really important in terms of the sense of fragmentation. I agree with him on that, but I do not think we create a space for engagement. If we think parenting is tough, for parents who are born with a child with an impairment or who acquires one, we have seen from Mr. Darmody and Ms Darmody that it is crisis. They are constantly swamped with trying to meet demands. There is no opportunity to engage with disabled adults about what the future could be. In fact, the future, as the Senator pointed out, is painted as pretty bleak. Certainly, from our members' perspective, that will be crucial because I do not think there is currently a shared vision. That is the reality of it. If we are talking about building a sense of momentum and collectivity between parents and disabled people, there is an obvious question: what does the future look like? Part of that requires somehow for it to be resourced for parents to be able to engage with disabled adults and for the disabled-----

Tom Clonan (Independent)
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Yes, but the specific question was whether the witnesses accept that carers and parents are mandated to speak to-----

Mr. Damien Walsh:

It is under Article 7, but this is the point that the prioritisation of DPOs should be that they are trying to engage to get with the collective lived experience. If you talk to young disabled people, one of the things they are crying out for is to see disabled adults in the system leading those conversations. If parents of disabled children were given the time and space to ask what the future will look like by talking to disabled adults, that could shift their expectations and their thinking. That is really important. This is not a critique of parenting. It is very tough. Again, we are pointing out the pressure around assessment of need and the pressure from the lack of services. It is very hard to envisage that future whereby inclusion could become a reality. That is really important. The fragmentation is a reality, but that is because we probably do not at this point have a shared language or a shared vision.

Maurice Quinlivan (Limerick City, Sinn Fein)
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Mr. Darmody, if you want to come in very briefly, you may. We are well over time.

Mr. Mark Darmody:

Cara's jersey said "End Disability Discrimination". Our view is that there is a generalised disability discrimination. I would go even a step further. From our conversations even with Ministers and the Taoiseach, often the conversation goes to things like DCA and carers and so on, and I always get the impression that the generalised idea is that there is some scam going on. Even with assessment of needs, it is out there that people are applying for assessments of need who do not need one. That is often said in these meetings but it is misinformation. The Senator is right: there is a generalised type of discrimination going on. It is very hard to explain it and very hard to accuse an individual person, but it is there - no doubt about it.

Maurice Quinlivan (Limerick City, Sinn Fein)
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Thank you, Mr. Darmody. I call Deputy McAuliffe.

Tom Clonan (Independent)
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So Mr. Darmody believes-----

Maurice Quinlivan (Limerick City, Sinn Fein)
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Sorry, Senator. I have called Deputy McAuliffe.

Mr. Mark Darmody:

Absolutely.

Maurice Quinlivan (Limerick City, Sinn Fein)
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Senator, you are well over your time, unfortunately.

Mr. Mark Darmody:

They discriminate against our children.

Paul McAuliffe (Dublin North-West, Fianna Fail)
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I might try to divide my time. Six minutes is such a short amount of time. It is more of a challenge for the witnesses than for us. We have the easy job of asking the questions.

First, on the DPOs, maybe to reassure the witnesses a little, no Oireachtas committee's agenda is set in stone. It is set by us, as a committee, and we can change it at any time and can decide to do that as a collective.

Second, the day we were setting our agendas, earlier that morning I had been at a DPO meeting for Dublin city. The public participation network for Dublin city in the Finglas office had held a meeting. I was blown away by the concept. More needs to be done to raise our awareness of DPOs. I have loads of questions about how that fits in with the multitude of representative organisations already in this space. For example, in the area of meeting the real cost of disability, I did some work with different organisations on the social welfare changes. There is not a huge consensus in this space about how we can provide different levels of financial support for people who have different levels of need without introducing arbitrary categorisation and so on. DPOs could provide that space, and this committee could provide that space, in a way other organisations are not able to. The multiple levels of need as regards people from different sectors is really interesting, and perhaps we might come back to it as a stand-alone meeting where we would discuss DPOs and how Government agencies are engaging with them. I ask for just a general comment on that. We might come back to the witnesses on it.

I am anxious to engage with Ms Darmody and Mr. Darmody on assessments of need. I am looking at this maybe in too simplistic terms in the sense of the delivery of a public service that should not in any way differ from any other public service we deliver. It should be delivered and there are ways in which that is done. It would appear, from what we are told by Departments, Ministers and so on, that there is not a financial constraint in terms of the delivery of the service; the real pinch point seems to be in the recruitment of therapists. The law is established by us here in these Houses. We could change the law in the morning, we could extend the timelines, we could remove the law and we would comply, but that would not be a desired outcome. The law is there as what should be the minimum threshold but we are not able to meet it because of a medium- and long-term challenge of recruitment. How do we get past that?

Mr. Mark Darmody:

As regards the starting point in this, I will give our own family circumstances. We have been permanently damaged by the actions of the State. We have two profoundly intellectually disabled children, and we will have to carry the can for the next 40-odd years as a result of the State's neglect. That creates in our house a sense of urgency. That is not there right now. There is nobody. I could ring up several psychologists in Tipperary and say, "Please, will you work Saturdays and Sundays? We are in a serious emergency." That is not being done. We tried to get it through to the Taoiseach that this is the essential component that is missing, that there is no comprehension that damage is being caused to people. This is talked about. The Taoiseach, on the previous occasion he was Taoiseach, told us that recruitment was an issue. What has happened in the three years since that conversation took place? I do not want to say nothing, because that is not true; the Government is doing things. I take Deputy Toole's points about the long-term issues. Our point to the Taoiseach is that right now those 15,000 are condemned because there is no hope for them and they will suffer damage. Unless the Taoiseach changes his attitude today, we will be talking about this next year.

Paul McAuliffe (Dublin North-West, Fianna Fail)
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I would have a different perspective on the Taoiseach's approach to this, but that might be a natural thing for us to disagree on. What I am focused on is the fact that if the restriction relating to those children at this moment who need assessments of need is recruitment, then what is the best way of deploying the State's resources? I am struck by the three thirds relating to this debate.

One third of people who go through the entire AON process do not get an outcome at the end. They do not reach the threshold to require an AON. That is not a desired outcome for those people. They still need the interventions but they do not get an AON.

One third of people going through the AON process are on the spectrum or within that area. There is no alternative to the assessment of need for them to get a diagnosis If they have another disability, there are ways to be diagnosed and treatment to be identified. There does not appear to be an alternative for the autism spectrum. The AON is the only way to confirm the need exists.

The last third I am conscious of is the hours of therapists spent on AONs when we need interventions and therapies as well.

These are the limitations we have right now. Mr. Darmody is correct that we need to ensure we are not in this space in three years. As of now, how can we make sure interventions are made for treatments and therapies? As somebody with experience in the area, I want to see treatments and therapies. Maybe it is because I am not prioritising the right thing, but to me treatments, therapies and interventions are key.

Mr. Mark Darmody:

I made a number of suggestions to the Taoiseach. He conceded that they had not knocked on every door so he does not know the capacity. I put some pressure on him and asked if he could say what the exact capacity is, how many psychiatrists were available and if he had contacted them. I will be honest; this is where the emergency thing comes in. He said there would be union issues if they started knocking on people's doors. This is the problem. They are worried about union issues rather than the permanent damage caused to my son. They are putting some bureaucratic issue ahead of permanent damage to children. They are thinking about paperwork before permanently damaged kids, which is the problem I have with them at the moment. He deals with this as if it is like an office task; I see it as permanent damage whereby one of my sons will be in a nappy for the rest of his life because the State could not do its job. That is the reality for people. When they do not get a school place, permanent damage is caused. I am not sure why a person in a seat of authority, I am trying not to be personally critical but his actions are causing permanent damage to children. That is the starting point.

It could start by knocking on the door of the more than 4,000 psychologists: "This is a call to emergency, a call to action. We need you. I know you take weekends off. Can you please give us weekends for six months? Can we clear this backlog?" We have never gone to therapists. The HSE has no engagement with therapists. In south Tipperary, I brought therapists to the HSE and it now uses them for other people. Why do they not use parents to source people and put pressure on therapists and psychologists to do more?

Paul McAuliffe (Dublin North-West, Fianna Fail)
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I hear Mr. Darmody's points. If I was the person in charge of the service, I would be looking at the blockages. Part of the difficulty is the man and woman power resource. That seems to be the limitation.

Mr. Mark Darmody:

On CORU, there is a private psychologist in Clonmel who has two other psychologists working with her. She has offered them to the local HSE and it said "No" because they were abroad. There is a rule whereby they would have to be in Ireland for something like three years. It is a stupid regulation. She could triple capacity and solve the AON crisis in Tipperary tomorrow morning but the HSE will not allow her. When that kind of bureaucracy is allowed, we are in some trouble in this country.

Maurice Quinlivan (Limerick City, Sinn Fein)
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I thank Ms Darmody and the DPOs for their presentations. What is it like in her home on a daily basis? What impact does it have on her two brothers, Neil and John?

Ms Cara Darmody:

It is really hard in my home. My two brothers are severely and profoundly intellectually disabled. That is really hard because they do not understand a single English word, especially Neil. As my dad said, Neil will be in a nappy for the rest of his life. He often self-harms by using his fist to hit his head when he gets frustrated because he simply does not understand the consequences of that. Even with food, they are very picky. It is hard to see my brothers having to struggle every single day.

I am really glad I am able to stand up for them and that determined me to start my journey in September 2021 when I had just turned 11. I saw the struggles in my home and realised I was not the only person with these struggles. Thousands of families in Ireland had the same struggles and that motivated me to keep going. My brothers cannot do exercise or any of the normal things I do, like going to school or clubs. They cannot join clubs and it is really hard on our family. My parents, especially my dad, could often go two or three days without getting any sleep because Neil and John will not go to sleep or might not go to sleep until 4 a.m. or 5 a.m. I do my best to help my parents and interact with them as much as I can. While it is tough, I definitely try to make a positive out of it. I use it as my motivation, determination and spark to help other people and try to fix this issue once and for all. My brothers made me determined to succeed and achieve great things. I would not be here without them and I love them so much.

Maurice Quinlivan (Limerick City, Sinn Fein)
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Before we go into the second round, I will let the DPOs know we will be coming back to them on the presentation and taking on board what they said as best we can, with the agreement of the committee. We will do that in private session and come back to the DPOs. I am not a Chairperson who has people coming in for no purpose. There will always be a purpose and some sort of follow-up.

Keira Keogh (Mayo, Fine Gael)
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I will come back to Mr. Walsh because we were cut off mid-sentence the last time we were talking. I agree with him that we still leave disability to the medical model and the lens of health, support and care. We need a shift and I like the lens of accessibility: access to education, work and the community. There seems to be a whole-of-government focus now on disability. When I talk to TDs and Ministers, they say they will be judged on housing and disability. Now is the time to get this right. I would love to hear Mr. Walsh's thoughts on that lens of accessibility.

If we look at jobs, there is still a feeling of tokenism when it comes to jobs for disabled people. I have a fabulous friend in County Donegal who is visually impaired. She has a fantastic job transcribing notes from psychologist's sessions. It is a purposeful, meaningful job but there are other times when companies and businesses feel they should get a medal because they employ somebody with a disability. I want to give Mr. Walsh more time to talk about that lens of access and getting away from the care model.

Mr. Damien Walsh:

If we think about employment, it goes to conversations about the cost of disability. It gives people income but also self-worth. People are participating in society. They are able to contribute and do things non-disabled people take for granted. We have found there are a number of barriers. They key part for disabled people around employment is two things. It is around school expectations and ensuring they have choice within the education system to explore what they want. What we are all talking about here is providing those supports at an early stage so people have the same expectations and the school system has supports in place for the transition to second and third level and further or adult education. People then build up confidence and an expectation that the pathway to employment for non-disabled people is similar to that for disabled people.

We did a huge consultation last year around disabled people's employment. That was crucial. The role of parents is crucial. Parents and family who have a drive, as we have seen today, for equality and inclusion are crucial. They place demands and expectations that their sons, daughters and siblings will be given the same level of opportunity. Not everybody wants to go to college but the suite of opportunities, regardless of impairment, should be there.

The ill-fated Green Paper was alluded to earlier. When there is a chance of creating systems around wage support or means-testing for secondary and tertiary benefits, it is important to engage disabled people. They are always the best, when given time and space, at thinking about what systems change would look like. These are simple things.

The access to transport is crucial, particularly for disabled people in rural areas. Are we investing in inclusive accessible transport so that when job interviews come up people can go for that? Do people have access to ISL? Do people have access to a personal assistance service from a young age so that they are building on that from a school system which is a really important part for us. People get a certain level of support at school but may not get that at a later stage. Why not create that system from an early age so that what people get as personal assistance determines what they want regardless of impairment so that being involved becomes the norm facilitating moving into employment and social interaction.

When we are looking at those systems and changes, we need to look at the wage subsidy scheme or the work and access programme from that early process, co-creating with disabled people. The work and access programme is a really good programme but none of it is online; it is all paper based. Immediately the disabled people we engage with say it does not work for them. It sounds like a great scheme to allow people to access the supports they really need and is very generous. However, there is a systemic barrier. How can vision-impaired people complete this? It is overly bureaucratic. Is there an assumption that people will game the system or do we create a system that is about promoting equality and inclusion?

The good intentions are mostly there but we need to be brought in earlier. The members need to be given the time and space to have a mandated representative say what will work for them. They are simple things. The Disability Act has a requirement for 3% recruitment and in the national disability strategy calls for 6% recruitment in the public sector. What does that look like? When people are applying how can we ensure reasonable accommodations are embedded in the public service? Do we need mandatory medical checks for employment? Will that rule out people who will be based at a desk and that it is not really required?

Are we ensuring that with future investment in our public buildings, they will be accessible? There have been issues raised about accessibility in this very building. We need to remove those barriers and create that visibility of disabled people in the system so that young disabled people will say, "I could do that; I could be that person."

I believe the Deputy referenced a DPO session in which one of my colleagues Peter Kearns was delivering. Peter is wonderful and he has appeared before this committee previously talking about disability equality. He was in Geneva earlier this year looking at Article 29 and the participation of disabled people at a local level through their DPOs but also as elected representatives. We had a position paper on that. It is really important for the political system to identify these systems barriers for disabled people to become elected representatives. When we see disabled people in positions of power as councillors - some of our members have had that role - TDs or Senators, we are creating an enormous sense of involvement and a sense that this is our country and we are making decisions.

As Senator Clonan said earlier, when we are talking about disability in this committee, we are not talking about individuals and are not making assertions about that. The point about the DPO network is that disabled persons organisations are collectives. With our members we identify our views on employment, health and legislation, and someone is mandated to bring that up at a local or national level. It is not the individual we are talking about, but people identifying the systems changes they want. That is the only way. There is no individual solution to a systems problem.

That is the point we are making about co-creating with this committee. We never doubt the bona fides of the elected representatives here. When we are talking about the UNCRPD, how can this committee work with DPOs to hold systems and structures to account? With other joint committees there is often a follow-up from the Department of housing on how it is trying to meet targets, a follow-up from the HSE on progress in provision of personal assistants or an update from the National Council for Special Education on how to make inclusive education a reality and what systems changes are required for that. Those are the bits we would like to delve into if we are given the time and space in the future.

Paul McAuliffe (Dublin North-West, Fianna Fail)
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Mr. Walsh has replied to some of my comments on DPOs. How do they interact with other established representative organisations? I would like to understand the difference between the two and the different roles they might have.

Mr. Damien Walsh:

I am sure Lianne and John want to come in because I do not want to hog it. DPOs are for and by disabled people. For example in ILMI, all the members are disabled, all the board members are disabled and 90% of the staff are disabled. Therefore, it is owned and controlled by disabled people. The local DPOs operate on a similar basis. We have established DPOs in Meath, which the Minister, Deputy McEntee, kindly launched. I will be interested to talk to Deputy Toole about the parents forum and how that might link into Meath DPO in the future. There are DPOs in Donegal, Cork and Wexford. Leitrim will happen. Sligo is very well established and so forth. They will interact with the public participation networks and the local community development committees. They will nominate the representatives to sit on them and say what they think should change. It embeds disabled people in the local policymaking arena as citizens who have a collective sense. It is not dissimilar from other community development organisations which have been very successful in the past.

Service providers provide services. The Health Act mandates section 38 and section 39 organisations to provide services in different areas, including for disabled people. However, disabled people do not own those and do not control them. Last year, we published a document entitled A Manifesto for Change. We feel that under the public sector duties of the Irish Human Rights and Equality Commission, because the State is funding section 38 and section 39 organisations, they have an onus to produce a human rights and equality statement. They should be putting measures in place to employ disabled people much as the State does with the Disability Act. However, they should really be working with DPOs to ensure that the governance of those services is managed by disabled people.

We are looking to build partnerships with some very large and very small organisations. Without question they are delivering vital services. That is their mandate and they should continue to do that. However, where they are providing a service, they should work with DPOs to ensure those services are managed and controlled. When talking about effectiveness, transparency and accountability, ultimately the large service providers should be accountable to disabled people themselves. They then need to establish those strategies for recruitment. The budget has almost crept up to €3 billion per annum. We are talking about the employment of disabled people. There could be a substantial driver of change there. Not every disabled person will want to work in disability services. However, we need to kick start that to address the chronic under employment of disabled people in Irish society.

Service providers provide the services and many of them are very well established. However, it is very clear under the UNCRPD that they do not have a role around that collective representation to say what disabled people want because they do not have that mandate. That is the role of DPOs. In a lot of instances at local level and national level, we work quite closely with disability services because when they are effective and accountable to disabled people, they will give disabled people greater control and choice to participate in society as equals, which is fundamental to realising CRPD.

Paul McAuliffe (Dublin North-West, Fianna Fail)
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Is it hoped to establish a DPO in every local authority?

Mr. Damien Walsh:

That is our plan. The work that ILMI is doing which Peter is leading is funding dependent. It is also dependent on getting that critical mass of disabled people. Individually it will be very challenging to change how education is delivered in our area. However, if we build that union of disabled people and we are the point of contact, we can build that energy. There is a huge appetite for it. We are funded by the Department of rural and community development. We hope to launch DPOs in Waterford and Tipperary later this year. We are doing extensive work in Dublin to include the four local authority areas. We are getting that general momentum. Peter has been delivering in Geneva on this.

Senator Clonan asked if things are getting worse or better. Often when systems change seems very slow, the natural reaction is to say that nothing is happening. However, at international level this has been recognised as being progressive. Our colleagues in the DPO network are addressing conferences and state parties about this co-creation process. We have to acknowledge that the CD really pushed hard and we pushed them hard on that. That is international best practice. As John said earlier, the trick is to get the structures to make sure it is implemented. That will always be the issue because while we might have a crisis at an individual level, we need to address that but we also need to go for the bigger picture as well.

Paul McAuliffe (Dublin North-West, Fianna Fail)
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We might hear from some of the other witnesses as well.

Ms Lianne Quigley:

The Irish Deaf Society was originally set up to be led by deaf people for the deaf community because up until that point, they had been oppressed. It was time for the deaf community to come together and stand up for themselves in developing policies and advising policy makers. The biggest aim of the IDS was for ISL recognition and ISL access, to put ISL as the focus in legislation for accessibility for the deaf community because up until that point it was a continuous language barrier for us. The Irish Deaf Society is deaf led for the deaf community in Ireland.

We have national council members around Ireland, and we are also members of the European Union of the Deaf and the World Federation of the Deaf.

Paul McAuliffe (Dublin North-West, Fianna Fail)
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How does the IDS differ from a DPO? What do you think the relationship between the two will be as things go forward?

Ms Lianne Quigley:

The IDS is a member of the DPO. Therefore, we have two roles. While we are a member of the DPO, we are also representative of the deaf community - those two purposes run parallel. Because of the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD, DPOs must be included in any decisions that affect the deaf people. The IDS is representative of the deaf community, and we are an example of an organisation within the DPO.

Mr. John Sherwin:

The IDS is a DPO by virtue of the fact that it is led by deaf people. Ms Quigley mentioned our national council members. When we say that, they are not individuals; they are deaf clubs and deaf organisations that are set up organically be deaf people in regional areas around Ireland. I am taking a cue from Mr. Walsh here about the funding from the Department of Rural and Community Development. We approached the Department to ask how it could help us with our deaf communities around the country and see if we could meet, and we got no response from it. I will follow that up, and I thank Mr. Walsh very much for the reminder.

On the broader question about how DPOs work with other organisations, the problem is that historically, Government funded service providers have been leaned on for representative feedback about disabled people's experiences of the services they offer. That is a conflict of interest. They cannot give feedback on the services they offer. The service users must give feedback on the services they offer. There is still a slightly competitive environment out there between service providers and DPOs as DPOs come into the national consciousness. Service providers are asking how they become DPOs. It is the wrong question. They need to ask how they work with DPOs; how do they stop trying to represent the lived experience of disabled people and deaf people and elevate them to represent their own experience. This goes back to Senator Clonan's questions and remarks about parents trying to work with disabled people and DPOs. I can sense a little bit of frustration there from the Senator. The CRPD does not minimise the voices of parents or the voices of service providers. Yes, they have a mandate to represent; the problem is that they have often been the exclusive voices without disabled people there. That is something that needs to change.

Maurice Quinlivan (Limerick City, Sinn Fein)
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I thank Deputy McAuliffe. Deputy O'Toole will be followed by Deputy Ó Murchú. They both have six minutes.

Gillian Toole (Meath East, Independent)
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I thank everyone again. I will go in reverse order to take a shortcut. The witnesses' DPO comprises five groups. Are there others?

Have the witnesses written to or corresponded with the other Oireachtas joint committees? Every day is a school day; I learned much this morning. Have the witnesses made contact with all the other committees as well? I know the IDS's human resources are scarce, so I do not know how that would work out but certainly, here is a good place to start.

In terms of preparing budget submissions, is that something in which the witnesses are currently involved? I would see that as a future agenda item for us. I will make some suggestions following on from Mr. Darmody's and Ms Darmody's point about knowing therapists and psychologists who are available. The Chair can correct me if I am out of order or if this is something we are not capable of doing, but we have the National Treatment Purchase Fund, NTPF, and there are treatment abroad schemes that the HSE runs and refunds. I am wondering in this instance whether the committee could correspond with the HSE to request a special fund using these, and that the conditions could be broadened whereby these funds could be used to access the services of therapists who are qualified and who will meet the requirements. That is one suggestion. The other is in terms of private therapists. There are people in my area who I have worked with on an ad hoc basis - I am just doing it off my own bat to try to help. The other suggestion is that the private therapists gather and document as much information as they can about the starting situation and the outcome. That involves talking to the families and getting the children's feedback so that there actually is a body of evidence being prepared. There are so many gaps that knowledge is power in terms of pulling all that together. Perhaps that is something that is currently happening in County Tipperary, but if not, that is a suggestion.

Maurice Quinlivan (Limerick City, Sinn Fein)
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I thank Deputy Toole. Whoever wants to answer that one may do so. On the Deputy's query about the NTPF, that is something we can discuss in private session and if the committee agrees, we can take action on that.

Mr. John Sherwin:

I will make a quick comment about engagement with other committees and hand over to Mr. Walsh who has been engaged with ILMI in pre-budget submissions. The Deputy is correct to identify resources as a problem. DPOs are not funded for this activity of engagement with the State. As this awareness of the value of our contribution grows, so does the demand for our participation, and we are stretched very thin. What we have found to date, although we would always try to respond in whatever way we could, is that we are not invited to other Oireachtas committees to speak about disabled services and matters, and that is wrong. With regard to the structures, of course, we do not expect to be invited to every meeting, and it is not appropriate for us to be at every meeting. There are meetings that should be with the State and service providers only, but there are also the correct structures and times that we should be involved in those meetings, and we find that we are not being invited to those meetings. In the previous Committee on Disability Matters, we raised this point and sought this committee's support in engaging with other committees.

As a general comment, and I am sure members are all reading into this role with the new committee, it is always a challenge for us as political representatives because committees change, and we feel like we are starting a little bit from scratch, and I am sure members do as well in a lot of instances. I just want to highlight that perhaps there is an opportunity for the committee to have access to and review our submissions to the previous committee.

To address Senator Murphy O'Mahony's question earlier about what has changed in the last ten years, a lot of disability campaigners will say that, unfortunately, the rate of change is very slow. A lot of the time, the papers that have been developed and that we put our resources into last year and the year before are still highly relevant and they are exactly the same things we would say today. Maybe this is an opportunity as well for the committee to review some of those papers - there are not too many - and we could engage in a session where we would answer questions on the submissions that have already been made rather than perhaps putting our limited resources into making new submissions that are effectively saying the same thing.

Maurice Quinlivan (Limerick City, Sinn Fein)
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I understand that all the witnesses' submissions from the previous committee have been published anyway so we do have access to all of those. This committee can access any correspondence that came into the previous committee as well by request from members.

Mr. Damien Walsh:

In terms of what Deputy Toole asked about other committees, the answer is "Yes", but it has been slow. Mr. Sherwin and Ms Quigley made the point around how disabled persons organisations are relatively recent in Ireland, but we are beginning to raise our profiles sufficiently, as ILMI presented around disabled people in the media and disabled people in arts and culture to other committees. This is not specifically related to disability in these committees, or the assisted dying legislation, but to recognise that disabled people are not solely interested in disability services or their impairments. It is to be able to present around sport, culture and arts but also on issues relating to access to healthcare or in terms of targets around public housing. We make submissions regularly, but there is still that part of raising the awareness at a political level of the role of disabled persons organisations. It is not dissimilar to the policy implementation Mr. Sherwin talked about - there is some progress, but it is slow.

In terms of the pre-budget forms and Estimates, I commend the Department of Social Protection, which has had a very participative process for community organisations. As DPOs, that is where we see the value; it is to be there.

For the last two years, the Department of Children, Disability and Equality has begun a similar pre-budget Estimates process. We would like to see a little bit more in terms of getting under the hood of how that process begins at an earlier point because we often see systemic inertia. There is a budget allocation of just under €3 billion to cover what exists already but we lack investment in new thinking. Everyone will say that investing the majority of a budget in segregated services is not a good spend - it is not consistent the CRPD - but we are not sure how we get to invest in individuals and families to resource them directly through things like personalised budgets. That is the bit that we must move away from. Rather than large entities of section 38s and 39s that represent an older way of thinking and pre-date the Disability Act around putting people in separate spaces, it is about liberating families and liberating disabled people at the same time by providing the supports that they will need, not just now as children but into the future so that they are given opportunities to participate. Again, we are talking about the CRPD and around "mainstream-first" - that inclusion piece. We have started to see a little progression but we need to see, and I think the officials in the Department will admit it, some high level investment in innovative thinking. That is going to be the challenge.

Maurice Quinlivan (Limerick City, Sinn Fein)
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Next is Deputy Ó Murchú who will be followed by Senator Margaret Murphy O'Mahony. They both have six minutes.

Ruairí Ó Murchú (Louth, Sinn Fein)
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Apologies for being late but I had to participate in a radio interview and speak in Leinster House. I managed to do it all very badly but I got it done.

I have not had the chance to address Mr. Walsh, Mr. Sherwin and Ms Quigley. This issue has been raised with me. As much as we are all delighted with what Cara Darmody has done, and where there is a whole focus on delivering in the field of autism and where assessments meet therapies, we all know that when we are talking about disabilities that there is a huge raft of things that needs to be dealt with. To a degree, when the focus is there, as much as there is abject failure, on the basis of that failure we are literally not addressing the other issues. I say that because any of the organisations that I have spoken to have said that.

I have a question, which I am sure has been answered, on the co-creation blueprint and the framework that is needed. The example that I was given was the council and the idea that it is fine to have accessibility officers but unless they are given the powers, and there is a conversation across the entire remit of the council, then it is a whole pile of nothing. There are good and bad examples which brings us back to idea of pilots. The issue is around where we go now. It is probably an element of the idea Mr. Walsh had. We are talking about from the cradle to the grave so it is the personalised budget and what can be done.

This committee has a piece of work to do to follow on thematically as sometimes we will have to deal with the shortfall when it comes to social protection, health and whatever. We will have to try to cover as much of that gambit as possible.

Mr. Damien Walsh:

At a local level, that is where a DPO will be effective. If you have a population where everybody has been individually asked what their needs are, then it is impossible for a local authority to respond to every single one of those, so people will get frustrated and annoyed. If disabled people are resourced collectively, they can ask what their main priorities are, and I will give an example. Along with Inclusion Ireland, we are funded for a project called From Consultation to Co-Creation and part of that is resourcing disabled persons' organisations in the north west. For example, through Sligo DPO cross-impairment space people all discussed their individual issues and frustrations but very quickly realised they cannot bring all that to one meeting with the HSE and need to be strategic. They very quickly identified a couple of pressure points that they wanted to see addressed. The collective space meant they could meet people in positions of power that could bring change. The issue raised was that some of the members who are vision impaired receive medical appointments in the post. The issue has been raised individually. Again, it is not that people do not want to do it but they had to find the right person who has the authority to change the system. Through the DPO engagement they were able to reach people and say that this is an issue for all of us and say that not everyone is vision impaired but some members were getting sensitive medical information and needed to go to their partners or family. They asked if it could be addressed.

Ruairí Ó Murchú (Louth, Sinn Fein)
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There is also the very specific issue of deaf-blindness. I know we are going to talk about accessibility. Obviously, we are dealing with a cohort where it is incredibly difficult. I accept that reasonable accommodations have been reasonable but we are neither next nor near that at the minute.

Mr. Damien Walsh:

No but the response given was they did not know that. They said they could change it either in their own CHO area or raise the matter at a national level. My example of a DPO shows that disabled can and do think strategically given the time and space to do so.

Let us consider an access officer in a local authority. People will say they recognise the council has limitations in resources but this is their priority, get this done first and then move on to this. It is like the "Wizard of Oz", where the curtain is pulled back and you say this is how local government works, which allows the representatives state that the council cannot do this now but will do this first. That means people are now directly involved as opposed to the traditional system where disabled people have no voice and are outside of the decision-making structures. That is an extremely important aspect.

On personalised budgets, in the review that will take place, we need to look at removing as much bureaucracy as possible.

Ruairí Ó Murchú (Louth, Sinn Fein)
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Yes.

Mr. Damien Walsh:

Whether it is child welfare or social welfare payments, we must think along the same lines as that. The HSE provides resources but the bureaucratic burden on individuals is too much. Therefore, we need to say that here is a resource and trust disabled people and their families to spend it in the right way. Disabled people are not going to use the entire annual budget in a month and then have no access to personal assistants over the remaining 11 months. They will manage their budget in a way that is appropriate to their needs. When reviewing that, it is about saying we do not put conditions around DA, child welfare or social protection payments but get the money and trust individuals will use it to their best needs. We need to put it as simple as possible that when disabled people get a personalised budget or a direct payment that they will use it responsibly, whether that is hours of PA or assistive technology or to pay for some transport costs. It is crucial to simplify things.

Ruairí Ó Murchú (Louth, Sinn Fein)
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It is resourcing and the framework. We need to do a piece of work on how we implement the framework.

Cara Darmody and Mark Darmody have said it straight. We are in the position we are in and we do not see that this going anywhere right. Our guests have said that the conversations have not even happened with stakeholders. It would be worthwhile if we did a piece of work on this, in the sense of engaging with the organisation that represents the psychologists and others, if the people concerned are happy for their details to be shared. It would be worth having that interaction as it would mean we get down to the brass tacks of how best we can offer this service, and without changing the law, make the best offer. That is in-school therapies alongside what the CDNT is meant to do while making sure we can fill those gaps as best we can, whether that is publicly, privately or whatever. I say that because we may have to wait a long time for the workforce planning placement to be in place.

Finally, we cannot let this issue drop so I ask our guests, what is next?

Mr. Mark Darmody:

Advocacy is like a ladder. Unfortunately, we are in the position where we have met the last three taoisigh and we met the present Taoiseach twice. I am doing my best not to personally criticise but the problem is there is nowhere to go.

Mr. Damien Walsh:

Yes.

Mr. Mark Darmody:

The asks are on the table. Right now, he is choosing to continue on this path. It is not me saying that. There is a HSE document that states the waiting list will increase from 15,000 cases to 25,000 by Christmas, so he is choosing to break the law. He is choosing to go on this car crash course which eventually will lead to the following question. Why is a person who breaks the law and continues on this course remaining as the Taoiseach of this country? So if it is going to be on his head and he is the guy who is going to persist with this and if these figures continue to increase, then at what figure will people ask questions? Why is he being allowed to remain in that position?

Ruairí Ó Murchú (Louth, Sinn Fein)
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Continued failure is unacceptable and impacts on too many.

Margaret Murphy O'Mahony (Fianna Fail)
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I take a different view from Mr. Darmody on what he perceives as his performance on this issue. The Government is very committed to the whole sector of disability. The Taoiseach has often said that he wants this Government to be known as having dealt with disability, so give him and the Government time.

I know it is easy for me to sit here and say that, but maybe Mr. Darmody is going a bit too strong, especially when the Taoiseach is not here himself to tease it out. I know he has met Mr. Darmody and, obviously, I am coming from another point of view but given time, this will come good. I certainly know the Taoiseach's intentions are very good with regard to the assessment of need. The same is the case for the Minister, Norma Foley.

All of my questions have been asked at this stage. That is the bad thing about being so far down the list each time. I thank all of the witnesses for attending. I know they are all very busy. What comes next is the most important thing. It is important that we all stay in touch. On a personal level, feel free to contact me at any stage. I am happy to meet the witnesses as a group, individually or however works for them. I thank them again and say "Well done" to them all.

Maurice Quinlivan (Limerick City, Sinn Fein)
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I thank the Senator. Everybody has contributed who wanted to contribute. If the witnesses wish to, they can make a final comment before we finish.

Mr. Mark Darmody:

I might come on in one point. As Cara said, she speaks for the 15,000 on the waiting list. With the greatest respect, I can tell the Senator that "give him and the Government time" does not wash when the Taoiseach said the same things - described the same plans - to us three years ago. He basically said the same things to us again two weeks ago. Families do not have time to wait. Our children are permanently damaged because of the waits that are talked about. It is not acceptable. It is not acceptable for the Taoiseach to break the law. We said all of this to his face, so we are not here talking behind his back. This has all been said. He accepts that he is breaking the law. He accepts it is not good enough. There is no one trying to defend this.

Why is it not being treated like a national emergency? That is the problem. We cannot give him time. That is why this list will go up. There is documentary evidence from the HSE that another 10,000 children will be permanently damaged. It is not acceptable to wait. He has to treat this like a national crisis and to say it is only words is not acceptable. No parent out there will think that is acceptable. Nobody in the disability community accepts that. We need urgent action.

Mr. John Sherwin:

I thank the committee for its reception of the concept of co-creation. In the medium and long terms, we believe that is the way to change the way disability services are delivered. We will be publishing a position paper on co-creation over the next four weeks and we will share it with the committee. We look forward to engaging with members on that.

Maurice Quinlivan (Limerick City, Sinn Fein)
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That concludes our consideration of the matter for today. I thank everybody for the very insightful contributions we had. At members' request, we will now go into private session to deal with housekeeping matters.