I welcome the Minister of State, Deputy Rabbitte. To get the show on the road in respect of this important business, I call the Chairman of the Joint Committee on Disability Matters, Deputy Michael Moynihan, to move the motion. He will then have 15 minutes to use himself or to share as suits himself.
Joint Committee on Disability Matters Report: Motion
I move:
That Dáil Éireann shall take note of the Report of the Joint Committee on Disability Matters entitled "Aligning Disability Services with the United Nations Convention on the Rights of Persons with Disabilities", copies of which were laid before Dáil Éireann on 23rd February, 2023.
I welcome the opportunity to speak to this report. The report was laid before the Houses of the Oireachtas back in March of this year. We are delighted to have an opportunity to speak on it. In the first instance, I will speak about our committee and the work that we do. We are one of the first parliaments in the world to have a committee that deals exclusively with disability matters. I pay enormous tribute to the members of the committee for their work and their dedication to the job at hand. Every one of them put in an awful lot of work prior to the summer on Thursday mornings and, more lately, on Wednesday evenings. We also have a large background team who are very dedicated and who do a whole pile of work behind the scenes to make sure we can advance the cause of people with disabilities, their families and their communities.
In our meetings, we are charged with making the lives of people with disabilities better. Some of the evidence we hear every week is harrowing, challenging and very difficult because the lives of people with disabilities and the way they have been treated across the spectrum over the years leaves an awful lot to be desired. As I said on appointment as Chair and again in every passing week as we have heard evidence, there is no doubt in my mind that, in the future, there will be a Taoiseach coming to this House to apologise for the way people with disabilities have been treated. I can see that coming.
I welcome the Minister of State, Deputy Rabbitte, to the debate. I thank her for her stewardship of the disabilities portfolio and for her great, earnest and decent hard work in what she is doing in the Department. She has worked together with us and showed camaraderie. She certainly challenges the system. We have to continue to challenge that system.
As a committee, we work specifically to implement the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD, and to ensure that it is brought across in each and every Department. This is a landmark convention secured under the UN. We ratified it in 2018 and each and every Department in the State is challenged to work with this framework in mind.
Since our report was published, the Minister of State's portfolio has moved from the Department of Health to the Department of Children, Equality, Disability, Integration and Youth. The key word in that title is "equality". It has moved to the Department dealing with equality, which gives me hope that we are moving towards equality for people with disabilities. Reform is under way and a challenge has been laid down right across the spectrum with regard to how we deliver services for people with disabilities.
In the time I have, I will speak on a number of issues. I could talk about the complexity of disability services and how they are delivered within the community. People come in to us every week from communities across the length and breadth of the country to talk about how services are affecting them, their service providers and their communities. Sometimes, we have to say that we are ashamed at the way these things have been done and that change is crucial and needed.
To take the matter from the cradle to the grave, back in the mid-1960s, because of community need, community organisations were set up to deliver services for people with disabilities on a voluntary and charitable basis. In the south of Ireland, such organisations include the Cope Foundation and St. Joseph's Foundation in Charleville. St. Joseph's Foundation was brought together by a local GP, Dr. Martin O'Donnell, and others within the town. That also happened with CoAction West Cork, Kerry Parents and Friends Association, St. Mary's, the Brothers of Charity and others.
This was community-led. That was the modus operandi through which the State was delivering services to people with disabilities over the years. There was a block grant and the organisations did what they could.
It is vitally important that those section 39 organisations continue because they have an ethos within their communities and are rooted within them, and if we move to a nationwide system, it becomes bureaucratic where everybody can stand behind the bureaucracy and decisions being made by their superiors or by the system. If one has locally-led deliveries like the section 39 organisations, they are very close to their communities and can see the challenges for families.
To that end, the decisions made a week and a half ago on the pay settlement are important to ensure that goes right through, and that pay parity becomes the norm as we go forward into new pay rounds. That is the delivery of service.
The system for children who are looking for an assessment of need and for therapies is failing. There are many challenges with bringing in staff and recruitment and ensuring the professionals are there. Even at primary or early in post-primary school, we should be talking about speech and language courses, occupational therapy, and about the needs that are there, and the great sense of fulfilment speech and language therapists, physiotherapists or occupational therapists get from advancing the lives of others. It is of great importance that that is done.
The challenge I see in that regard is that people are qualifying and then go into private practice. Over the past number of years I have seen those young people leaving public practice to go into private practice because they are so frustrated by the public system. If one takes any other walk of life, people start out in the private sector and they migrate into the public sector. In this instance, with regard to therapies and therapists, in particular, there is a sense that they cannot work in the system. They get frustrated and if they are seeing, four, five or six patients a day, somebody is coming along to say that person is seeing too many patients or is pushing the boat out.
We have the assessment of need and the therapies for young people and we must ensure primary school places are available. Thankfully, in many communities across the country, particularly in rural communities - it is a challenge in urban communities - autism spectrum disorder, ASD, units are being built and opened. From what I have seen and from the contact I have with parents and communities, it is more difficult to get that level of service in urban communities. It is something we need to be very careful of because that service is needed in rural and urban Ireland.
Primary schools have been very innovative probably because they are growing up from the community. They have community boards of management, are community-led and are very much ingrained in it. We have difficulties when children move from there to post-primary education. The issue with regard to post-primary education is that the places are not there at the moment and it will take a number of years before they are put in place. Construction can be very frustrating, with the various stages schools have to go through to get new buildings.
I could speak for about two hours on this topic but I have only reached the child aged 13 so far. In the remaining five minutes available to me, I would say that the evidence is that the system is too cumbersome and there is no consistency within it if somebody wants help by way of personal assistants, PAs. If home care packages are in place, a person is given a half an hour here and 20 minutes there.
Even yesterday, at our committee meeting, the word "attitude" was mentioned by one of our witnesses. When that person was getting on a airplane, it was announced over the intercom that the plane would be delayed taking off because the crew was having difficulty putting the wheelchair on the aeroplane. In all fairness, if that happened to other minority groups within society, it would be highlighted the length and breadth of the country. That is the attitude. I do not know whether it is a charity attitude. It pains me to say this but sometimes I think some people have an attitude that people with disabilities are a burden on society. Far from it because if we had a totally inclusive society, with what people with disabilities can contribute and in how they can make our society better and stronger and give all of us a sense of what a holistic society is like, I believe it can be massive. There is also an attitude in some sections of the HSE when people are looking for services where some people believe that it is out of their grandmother's purse they are giving the extra support to families. That is simply not acceptable.
We have a considerable distance yet to go and a great amount of work to do. Our committee and this report has taken on board all of the statistics and the information, and I have to pay tribute to everybody who has been so honest in coming in and giving their evidence so that we can compile this report and can lay it before the Oireachtas and ask the Government and all of those authorities to implement it. There is no point in us doing reports otherwise. We have a number of reports and we believe we need to compile them and put the evidence out there.
If somebody asked me coming into this debate today for one or two things I would like to see changed with regard to how our committee works and how we are able to change the lives of people with disabilities, I would say it is attitude. Recently, the Minister of State spoke about the negotiations at which she said people were talking about money but she was talking about people. It is important that we understand we are talking about citizens of this republic and about people who can and are making a very significant contribution to their families and to their communities. The Joint Committee on Disability Matters must try to effect change to ensure the lives of people with disabilities are changed right now and into the future and that that their lives matter within society.
Over the years I have met many parents and people who are looking for extra services and they have mentioned the pain they go through fighting the system. When they get to old age, they nearly give up fighting because they have had to spend so much time challenging the system to get the services. Many families have contacted me about watching our Joint Committee on Disability Matters, whether it is on a Thursday morning or Wednesday afternoon. They feel that because of the contribution of members of the committee from all sides of the Houses, and I have to pay tribute to all of them, that we are trying to keep the noise going. I constantly say that while we can bang the drum, we have to start banging it even louder because there is a very significant unmet need within our society for people with disabilities.
We must change the attitude, where everyone is an equal citizen, whether able-bodied or disabled - almost one fifth of the population of this country has a disability of one type or another, which is a fair number of people - and that they matter. When we put the name "disability matters" on the committee three years ago, it was because we wanted to ensure people who had disabilities understood that their families and their communities mattered.
I thank the House for the opportunity to speak on this matter. I commend the report to the House. Unfortunately, I have another disability event to attend to at 5.30 p.m. but I again express my thanks for this opportunity and pay tribute to those on the committee, who gave so earnestly of their time and for their dedication, and to our background team, who do an amazing job in our committee.
I thank Deputy Michael Moynihan for his opening contribution. I am delighted to have the opportunity to speak with all Members and those listening in this evening. Deputy Moynihan was quite right when he talked about the number of people who tune into the Joint Committee on Disability Matters because it matters to them. There is a huge population who tune in. I want to pay tribute to all of the members of the committee. I do not want to single out any individual because I know every one of them works as a collective to put the person at the centre.
What changed in this Government and the Thirty-second Dáil was the formation of the Joint Committee on Disability Matters. I have said this numerous times at this stage. The dial is changing on disability. The expectation is higher - the bar has been raised and now it is time for delivery. The joint committee has enabled putting the person at the centre. It has also made that opportunity for me as a Minister of State to be a believer. I can lean on it to actually push against officialdom, break down barriers and align disability exactly as it is supposed to be with regard to the United Nations Convention on The Rights of Persons With Disabilities, UNCRPD.
We should look at the child or person in the whole from the cradle to the grave in the scenario the Deputy outlined, although I do not know whether he got past 13. If we had that whole-plan approach and look at how we do it from the start, we would learn that when a child is born with a congenital condition and that diagnosis is known, that is actually accepted within bureaucracy. It is not necessary to redo the paperwork at the entry into early years education and school or at the transition to secondary school and day services or residential care. We do not need to do it. We only need to do it once. That would mean people's domiciliary care, and carers, would be sorted because the ability of our most loved would not have to be downtrodden. That is what we have to do here. We have to level down all the time to get recognised. That is what families have to do. That is not the way it should be, however. What I have seen within the Thirty-second Dáil is a changing of that dial.
I thank all Members for enabling us to have that opportunity and put a voice on it. Some day we will get past the Thursday evening slot and make it on to the Wednesday slot where we are prime central. We will be in the middle of the Topical Issue debate and not at the end of it. We will have really landed when we get a Tuesday slot, the premium slot. We are getting there, however, because at least I am in this Chamber on a regular basis where Deputies hold me to account. When they do so, they are holding the Department to account, but they are also holding the agency to account. When I talk about the agency, the agency in this case is the HSE because it is the agency that answers to me. As Minister of State with responsibility for disability, the Joint Committee on Disability Matters has enabled me to step outside the comfort zone of just the specialist disability services. It has allowed us to talk to people. The Minister for Children, Equality, Disability, Integration and Youth, Deputy O'Gorman, believes in equality and equity as much as I do. Sometimes we do not use that long departmental title: we say "Minister for Equality" because that is what it is front and centre.
That is why in the budget this year, the Minister looked at the access and inclusion model, AIM, and at expanding that programme to ensure that children with disabilities could have a longer opportunity in the early years setting. I have just arrived back from Boyerstown National School in the last half hour. The special education department, along with the principal, Mr. Cathal Ó Bric, and a very good special educational needs, SEN, teacher, Ms Smith, accommodated Willow Carroll and another little child in attending mainstream classes. These are children who are born with complex medical needs but are able to attend mainstream education because the Department of Education enabled them to actually put an addition to the classroom. Not only have they got an SEN and two special needs assistants, SNAs, but Mr. John Carney is now working with us within the National Council for Special Education, NCSE, to ensure that we have nursing care to support that child to go mainstream in her local national school, but also to go to the same school as her brother so that their mother only has to make one drop-off. That is where we need to be going. That is a good example of what good looks like. That is where the UNCRPD is being aligned to. More autism spectrum disorder, ASD, classes have been added to mainstream national and secondary schools. That is, yet again, where education is aligning with the rights of the child to participate in education equal to their brothers, sisters, neighbours and peers within education.
We might look at that transition planning piece. The child and adolescent mental health services, CAMHS, in County Wexford was able to recruit four social care workers as a result of the dormant account funding it received. It could see how best to support a family and child and ascertain whether they all needed to go to day services or whether other opportunities were there for them. Yet again, what they were able to do when they could afford social care was to go to special classes and special schools and actually work with parents and young people. They could listen to the voices of young people to see what their ambitions were, where they would like to attend school, what they would like to do at another level and what sort of training they would like to receive. This year in the community healthcare organisation, CHO, 5 area, 116 children did not have to attend day services. They were given the opportunities with either the national learning network and education and training board, ETB, to actually focus on their will and preference. That is again aligning with the UNCRPD. When children come through that and want to go on to third level, it is important to ensure that we have the personal assistant, PA, support. We have not gotten that right yet. To be very fair to the Minister, Deputy Harris, and I want to be fair to him, he is enabling it through education. However, the access to that PA support needs to be mainstreamed first. That would then be aligning with the UNCRPD. It is not there; it is ad hoc. It is hit and miss depending on the geographic location of people's CHO. They are at the behest of who makes that decision to ensure they can access those hours. The hours for a PA are not the same as for a home support worker. It is a completely different understanding. It is enabling people to participate and have the fullest life they can whether it is going to the table quiz on a Friday night, the cinema on a Saturday night or the Aviva Stadium to see a rugby match. It is their will and preference as to how they would actually use and assist with their PA support. We have much work to do on that. With the assistance of the Joint Committee in Disability Matters, we are breaking down the barriers. We have a clear understanding of what a PA is and know the difference between a PA and a home support worker, and that is really important. However, the PA that people have in higher education could actually become a person's best buddy, enabling him or her into employment or going to the next level.
Employment is the one piece I think we got right this time in the budget. What we got right was something that in actual fact we were trying to do for three years. The Irish Business and Employers Confederation, IBEC, has been saying it all along. If we could reduce the wage subsidy scheme from the mandatory 21 hours back to 15 hours, it would give employers a better opportunity. It was delivered this time in the budget. I am delighted to see it there. Now, it will only work, and it can only work, if the PA support is there for it. In the budget I have done this year, I have yet again invested more into PA services, but what I need to happen now is the understanding of that connectivity. Part of raising people out of that poverty threshold is ensuring that the PA is available for individuals.
The PA home support piece at the moment is not legislated by any manner or means. My fear is that if I were to put it on a legislative footing this second, it would stall the progress of the investment I want to make. At all times, I am trying to ensure that we keep progress going. I imagine that we should be able to do both but at the moment I do not want to stall the investment because I am looking at the disability capacity action plan. Within that, I have three priorities, which are respite care, residential care and PAs. I am looking at them as the catalyst to future development and actually addressing the barriers that young people and not so young people have with regard to the prism through which they view the world. In order to keep the family unit together, I believe we need to start at the very beginning and have that respite care piece. We are adding capacity into that. The budget that will be delivered this year will be the largest budget on respite we have ever seen. The PA aspect is another piece of it. The residential care aspect addresses many of the emergency cases. We need to have the multiannual funding put in place. Hopefully, the disability action plan, when it is launched, will give the providers that actually do provide much of our residential support the comfort to know there is a pot of money that will be layered out over the next four years and then in the four or five years thereafter to build in capacity. When I cross other Departments, I see the issues they have in aligning themselves through the UNCRPD and the challenges that poses.
I talk about the Department of Transport, for example. We all know that our day services depend on the number of buses that are in this country at the moment. At the same time, we have so many organisations that have so many buses but they stand up for such a portion of the time as well. It bothers me to think that when I drive to Galway on a Saturday, and I go by Brothers of Charity and there are 54 buses just stood up at Rosedale, that those buses are sitting idle. That, to me, is not sweating the asset of a resource. We also to have to look at how we can pool our assets and how we can look at what other models would like. The Leitrim model, and the HSE open routes Local Link project is a really good example, as is Accessible Community Transport Southside, ACTS, which has other partners in the Dublin side where they have pooled together their resources. They are able to not just carry one person with a wheelchair, they are able to bring four wheelchairs. A person is able to book that bus and they can bring their friends, if they so wish, to go out.
We have to look at how we can do it better. That is why I secured once-off funding of €5 million in the budget to look at the whole transport piece. We can be innovative, we can look at it differently, and we can look at the urban-rural piece. I see that access to transport will be one of the biggest barriers to accessing employment, education and the equal right to participate. They have it already cracked in the ACTS system here in Dublin but the only problem is that its fleet is ageing. That is why I got extra funding. I want to review what ACTS has in an urban setting, which one could cross over three community health organisations, CHOS, 6, 7 and 9. Then I would also like to see it out in a more rural space, the likes of the Galways, to see how the fund could be used. How it works is that one is collected by the provider and can be brought to day services. It might be St. Michael's House here, or Stewarts Care here or another provider there but there is an organised route. It is not everybody going out of different organisations. That, to me, is disorganised and a waste of money. We can do it an awful lot better, and that is aligning to the UNCRPD.
Young people participating in sport is another area, and I am delighted that the Minister of State at the Department of Tourism, Culture, Arts, Gaeltacht, Sport and Media, Deputy Thomas Byrne, has made disability one of the requirement pillars within the sports capital programme. The reason for this is that we need to move away from tokenism. There has to be a proper service agreement in order that young people and not-so-young people have access to where the State spends funding on investing in clubs and infrastructure, and that everybody within the community has access to that infrastructure.
The Minister for Social Protection, Deputy Heather Humphreys is doing the same with regard to where she is putting in the regional hubs, and the accessibility within them. People who are neurodiverse might not want to get on the train, go in the car or go into Galway. However, they might be very happy to work in Comworks in Loughrea, where they would have their own room but would be able to participate in a working environment. I also want to acknowledge that under this Government, we have learned how to do remote working spaces far better. We have put sensory spaces, lifts and accessibilities into them. That is down to a lot of the work that Deputies have done in the Joint Oireachtas Committee on Disability Matters, from listening and talking to parents and other people. I think that if we do not put the person at the centre, we will not move forward.
This morning, I launched the National Disability Authority, NDA's big workshop in the Aviva Stadium, and the theme of it was participation of persons with disabilities in politics. How we will really see the change of the dial is when we see more people with either physical or hidden disabilities participating in public life. That will be really welcome. We need to move across all the Departments and align them very well. A lot of Departments have come on board really well. The last Department - and it is not by leaving it last that I am picking it out - is the Department of Housing, Local Government and Heritage. We want to have people live their best, independent life - be it independent, supported independent or within the community space - and ensure that when we design a house we design it so it is universally accessible and meets the ageing needs of the population, and that no matter who access that property regardless of their age or ability, it would be universally accessible to young and old. On that last piece, I will come back in again with any comments later on.
I thank the Minister of State. We have 30 minutes remaining for all, and we have five speakers. That is six minutes each. Let us try it and see how it works. Deputy Violet-Anne Wynne is first.
I am delighted to speak on this motion, and I want to thank the Joint Oireachtas Committee on Disability Matters for its report on aligning disability services with the UNCRPD. First, I want to commend the Minister of State, Deputy Rabbitte for her comments in her statement this evening, specifically on the call for holding Ministers to account but, more importantly, how that process allows the Minister to hold officials to account. That is a significant role of the Opposition, finding gaps and inefficiencies and pointing them out loudly, especially on matters that have societal significance. I also want to commend the point that was made about this being a Thursday slot and not a Tuesday or Wednesday slot, and I look forward to it being included in statements on a Tuesday or Wednesday.
I have many concerns about disabled people's rights in this country, people who are disabled not biologically or by virtue of their impairment but by the surrounding society that refuses to support them. For those who are watching at home, the background to this is that Ireland signed the UNCRPD in 2007 and ratified it in March 2018. This means, in principle, that Ireland is committed to promoting and protecting the full employment of all human rights by people with disabilities. However, we have yet to ratify the optional protocol.
I was a proud member of the Joint Committee on Disability Matters, and at its first meeting, the absurdity of the significant delay with ratification of the optional protocol was discussed at length. It is important, on an international level, that we give people who feel that their rights have been violated under the UNCRPD a recourse outside of the country. That is all that the optional protocol does. There is a symbolic significance in the delay in ratification, and people with disabilities are incredibly upset that they have had to face such delays historically and at present. In their eyes, they feel that it is a direct violation of their rights, and instead seems like the delay is only to ensure that the Government gets its ducks in a row. However, that process is taking far too long, and unfortunately has further embedded the message that people with disabilities are just not prioritised by this Government and, importantly, previous Governments too, as in all those before the Minister of State, Deputy Rabbitte's time.
According to the NDA and the Disability Stakeholder Group, Government Departments are failing to make sufficient progress to meet the minimum requirements for disabled Irish citizens as set out by the UNCRPD. I support the recommendation of the Joint Committee on Disability Matters to ensure that there is sufficient funding for the efficient operation of access to the complaints and scrutiny of the UN committee.
Article 9 of the UNCRPD focuses on accessibility and puts an onus on signatories to provide equal access to transportation for people living with a disability, in order to support them equally in daily life, for example, to access further education, gain employment, be involved in their communities, or even just to participate in social activities and hobbies, and have that social aspect to their lives. Notwithstanding the fact that the Disability Act 2005 requires all public bodies to ensure that access to all public areas is accessible for people with disabilities, that is some 17 years ago, and the conversation has not moved on. When I iterate in this House that there are years of hurt there for people with disabilities, it is due to the fact that we have Acts that have not been implemented. This adds to the notion that these important Acts sit on shelves gathering dust.
I met with a delegation from the Clare Leader Forum in my office this week, including chairperson Padraic Hayes, Dermot Hayes, Noelle Keane and Martin Hayes. We discussed a range of issues. Central to their concerns were both the UNCRPD and the Green Paper on disability payments. There are 27,213 people with a disability in Clare, and they are denied basic rights and services every day. This includes everything from public transport with insufficient wheelchair spaces, to inability to access the employment market, and failures even now to meet universal design standards.
The Minister of State in her last report to the UN reported that stakeholder consultation had flagged all of these issues and more. An update from the Government on what is being done to tackle these issues would be welcomed by all. There is a structural abuse against people with disabilities by the State. It has gone on for far too long. The lack of access to transport is one of the key barriers preventing the realisation of these fundamental rights and can lead to the further economic, social and personal isolation of people living with a disability. It is a major barrier to the freedom of movement of people with disabilities. This is evident in rural County Clare, for example, where access to bus shelters is a massive issue. The lack of accessible local buses is also an issue. The single-deck bus that is accessible has space for only one wheelchair user.
The six minutes are up, Deputy. We want to get everybody in.
I apologise. I will quickly move on to my last point. Although there were 70,000 actual hours allocated last year in respect of PA services, that is after 80,000 hours were lost in 2021 with an increase of 46,000 in 2022. In real numbers, the increase in 2023, after the restoration of previously cut hours, is only around 36,000 additional hours secured. I am hopeful this will be increased in 2024. I have faith that the Minister of State will do so.
I am happy to speak on this motion. I congratulate the Joint Committee on Disability Matters on all the work it has done. I want to note how fast problems are increasing when it comes to the challenges faced by children in need of disability services. This report was published in February. At that time, the HSE had confirmed that an average gap of 28% existed in respect of vacant positions across the CDNTs. Recently the Road Map for Service Improvement was published. It noted there is now an average vacancy rate of 34%. According to the roadmap, this equates to around 700 positions, with some teams experiencing a vacancy rate of over 60%. That is how fast the CDNTs are moving backwards. Neither south Tipperary nor north Tipperary is immune from this. Both have seen the number of applications for assessment overdue by six months increase from the first quarter of this year to the second quarter of the year. This is deeply worrying. I have to wonder how effective the roadmap is going to be, considering that the HSE has been underfunded. There is a recruitment freeze and the section 39 proposals have not been formally agreed yet. It is deeply worrying that legislation is in place committing to a timeline for initial assessment but after that there is no commitment. The Seanad has been discussing legislation to address this. Troublingly, efforts have already been made to kick it down the road and it is questionable whether it will be dealt with in the lifetime of this Government. I would appreciate it if the Minister of State could expand on this.
I thank the committee for including in its report the need to develop a management information system and case management system that would measure the metrics and the outcomes for families all the way through the process. I note that the intention is to roll out the system by the second quarter of 2024. However, it is a matter of concern that under the current system, where that is manually entered, considerable under-reporting is expected. What provisions are being made for that?
I ask the House to forgive me for harping on about the roadmap, but it extends to the point made in the committee's final report that the aim is to provide in-person first interventions for the 16,500 children on the waiting list. What can their families expect? Are they going to be given a meeting and sent home with leaflets and then have to wait a year or more for the system to actually start working for their children? The real fear is that the delays will be hidden behind the first intervention.
Parents have drawn my attention to a question that has been asked by organisations such as the Irish Association of Speech and Language Therapists. Where was the engagement with families, front-line clinicians or unions in developing the document? Is this the manner in which we intend to proceed? What is the response of the Minister of State to their concerns about the ability to implement the much-required changes in paediatric disability services for children, families and clinicians?
Like previous speakers, I want to compliment the Chair of the Joint Committee on Disability Matters, Deputy Michael Moynihan; the Vice Chair, Deputy Tully; and the team working with us. I am honoured to be on that committee. Excellent work is being done. As previous speakers have said, we are listening but we have huge challenges. In fairness to the Minister of State, Deputy Rabbitte, she has always been helpful to us and she came to every meeting. Even now, on a Thursday evening, the Minister of State is here to take our questions. That is important and I thank her for it.
I will talk about my own area, as always, because many national issues have been covered. I want to give some statistics. Many people who come into my office are on disability allowances. The system has taught them that illness costs money. According to last year's census, more than 14,300 people in County Carlow, or 23% of the county’s population, experience at least one long-lasting condition or difficulty. In its response to budget 2024, the Disability Federation of Ireland said it was devastating to see the sidelining of disability and the tokenistic attitude to people with disability in the budget. I know the Minister of State is working on this, and we need to address it. According to the CSO in 2022, almost one in five of those unable to work due to a disability - 19.7% - are living in constant poverty. This is four times higher than the national average of 5.3%. I know that the Minister of State is working with the Minister, Deputy Humphreys, because it falls within several Departments. I welcome that we now have the Green Paper on Disability Reform. Some consultation meetings are ongoing at the moment, with three remaining. I will give some more figures for my own area. In County Carlow there is no occupational therapy for children. The waiting list for this service is incredibly long. Speech and language and CDNT assessments are working from referrals given in 2019. The families of these children cannot afford to pay for private assessments. I realise that the Minister of State, as she has done in other areas, is bringing in a system whereby families will be helped when they have to access assessments privately. I would like an update on County Carlow in that regard.
Children in my constituency who are entering mainstream schools this September have never seen a therapist. We have no special educational needs officer in Carlow. This is another huge challenge for children with a disability. At our meeting yesterday, we spoke about the local elections, the general election and the European elections. An issue that was brought up related to people with a disability looking to run for election. We all know about the costs associated with running for election. It is expensive to get posters, leaflets and literature done. That presents a barrier for people with disabilities who want to run for election. Is there anything the Minister of State can do to help with that?
I met people from the Carlow branch of the Irish Wheelchair Association during the week. Transport, as has been mentioned, is the biggest issue for people in rural Ireland, particularly in Carlow. Some of the people who spoke to me said they find it challenging to get transport to different events, to reach the service or to go into town. There are huge issues with transport. In Carlow we have some taxis with wheelchair accessibility but we need a lot more. We need to see what sort of funding we can provide to help with that because all taxis should be wheelchair accessible. Medical cards came up. Believe it or not, people face barriers because they have to go back every few years to reapply. That might need to be looked at. Footpaths are another issue.
I would like to mention another area I have been working on. I know the Minister of State is aware of it. Some people who had to give up work because they wanted to stay at home to mind their child do not qualify for the carer's benefit because they are over the limit. I have huge issues with that. If someone is staying at home to mind someone with a disability, they should get the carer's allowance. Again, that involves working with different Departments. This is where we are falling down - we fall between all the different Departments. We need to see more joined-up thinking.
I can honestly say the Minister of State has been fully committed to supporting all the different concerns I have brought to her. A few months ago I met with some of the parents from Down Syndrome Carlow. They were disillusioned because some of their children have not been assessed and are waiting for occupational therapy or speech and language therapy. We need to look at this. Senator Clonan is gone now.
At our meeting yesterday we spoke about Leinster House. I will be writing to the Minister of State and to the Ceann Comhairle because we have no wet room in this building. If we have someone in Leinster House who has a disability and might need a special room, we do not have that. We need to lead by example. I am sure the Minister of State will give me her full support, but we as Members of the Oireachtas must ensure we have a facility here should someone need it. I will be writing to the Minister of State and know she will do her best on this.
I again thank her for her hard work. The main thing for me is to get more staff and focus on retention and recruitment, especially in Carlow. We need more staff; it is a huge issue in the services. I am in CHO 5, as the Minister of State knows.
Urgent action is needed from Government on disability services to ensure the rights of children and adults are upheld in line with the UN Convention on the Rights of Persons with Disabilities. This is the key message that comes from this report. The report is called Aligning Disability Services with the United Nations Convention on the Rights of Persons with Disabilities. It is the conclusion of the Joint Committee on Disability Matters after hearing from individuals with a lived experience of disability, those caring for children with disabilities, those caring for children with autism, disabled persons’ representative organisations and disability service providers. The committee also heard from and probed the present Minister of State, who has responsibility for disability, the Department of Health, HSE officials and the Department of Children, Equality, Disability, Integration and Youth. The report contains 38 priority recommendations across a range of areas. It includes rights-based disability service provision, community-based health services and support, children’s disability services and future innovation.
Ireland signed the UNCRPD in 2007. We ratified it in 2018. We were the last EU member state to do so. The articles contained in the UNCRPD are binding on those state parties that have ratified the convention, which means Ireland has made a commitment to protect and promote the rights of disabled people. In reality, this is not the case and this is reflected in this report. The report finds policies and legislation that would enable progress to a social and rights-based model of disability and care continue to be delayed. For instance, and possibly most importantly, the Government has not yet ratified the optional protocol of the UNCRPD. The optional protocol would enable individuals or groups of individuals or third parties to submit a complaint to the UNCRPD committee if they believe their rights under the convention have been violated. Complaints can only be made against a state party that has ratified the optional protocol, so it must be ratified without further delay.
The report also calls on the Government to review the Disability Act 2005. That Act says Departments and public bodies must work to improve the quality of life for people with disabilities. The Act, when initially introduced, aimed to significantly advance the position of persons with a disability in Irish society. However, the centre for disability law and policy noted the Act’s subsequent application in the context of assessments of need and accessibility of public services has highlighted that it does not meet this aim due to the Act’s focus on assessing needs rather that a right to be included in the community and access to support, which undermines Ireland’s commitment to disability rights under the UNCRPD. The Government needs to review the Disability Act to ensure it is aligned with the UNCRPD; it is outdated. This could and should have been done in conjunction with the review of the Education for Persons with Special Educational Needs, EPSEN, Act, which is currently happening. The two Acts were designed to run in tandem and it is a missed opportunity not to have looked at them in conjunction, especially the part of the Act that deals with children.
The report finds that in general the public is not aware of the issues people and children with disabilities face in the health service. It points to the lack of a national disability awareness strategy to raise awareness of these issues and stresses that because of the inequity in service provision, parents and individuals with disabilities are having to impact their own privacy and dignity through engaging with the media to raise awareness and access services. It is also occurring through parental action in a range of court cases taken against the HSE, again to access services. The report emphasises the need for:
a wider person-centred support plan for community inclusion to target the development of community-living infrastructure, care and support, including respite and support for agencies to re-configure their services, along with renewed and strengthened commitment to people with disabilities under the integration of SláinteCare.
It continues that “Otherwise, the State will be locked in health services that are medicalised and segregated and impact people with disabilities rights”.
An area I consider crucial is the delivery of children’s disability services. This report informs us once again that the progressing disability services model for delivering children’s disability services is failing in this task. It points out it is not achieving early interventions as standard for children with complex disabilities and it conveys the message that parents are distressed as they see the negative impact of the lack of intervention compounded by the routine disruption caused by non-standard delivery of service across the children’s disability network teams and stresses that the progressing disability services model “must be urgently developed to fully align with the UNCRPD”.
Last of all, the committee’s report also highlights the findings and recommendations of the Disability Capacity Review to 2032. That review reported on the scale and range of the capacity required to meet the requirements for disability support services between now and 2032, and this review indicates the State’s spending on disability services will have to increase by up to half over the next ten years. It is disappointing, therefore, to see the recent budget come nowhere near the funding that is required to start to deal with this.
Deputy Murnane O’Connor referred to a meeting we had yesterday on a number of issues. One which came up was making our Parliament autism-friendly, which is an ongoing issue, but we also need to make our Parliament accessible, and one of the things was getting a changing places toilet put into Leinster House. Another would be changes to the audiovisual room. If we have speakers who are wheelchair users, they cannot get behind the desk or it is very difficult for them to do so. I have raised that issue before, as has the committee. I am conscious we have an old building and it is difficult, and even this Chamber would be difficult to make fully accessible, but there are things that could be done.
I also attended the end of the NDA annual conference today. There was person addressing us virtually from Scotland to speak about how in Britain there is a fund to support election candidates with a disability. I had heard about this before. It is only for the extra costs, so candidates cannot use it for their election material or anything like that. It is for the extra costs associated with disability and it would be brilliant if something like that could be considered for here as well. It was also raised in the committee meeting yesterday.
Before I finish, I commend my colleagues on the committee and the staff who worked so diligently on putting the report together. Most importantly, I praise the people with lived experience who engaged with the committee, because without the unfiltered lived experience of the disabled community, this report would not carry the weight it does. I urge the Government to accept this report and to start to deal with the issues within it.
I pay tribute to the Chair and Vice Chair of the disability matters committee for their work in leading this report and to the members for their contributions, as well as the secretariat staff who worked very hard to put this together. As a recent member of the committee, I take no credit for the report or its recommendations. It would not be appropriate for me to claim credit, but I am a very proud member of the committee and it is an honour to work with very dedicated and passionate members from Government and Opposition sides, who are also very knowledgeable. I like to think that in the time remaining in this Oireachtas I will bring something to the committee through my training as an engineer and my background as an active travel campaigner as well.
I take the opportunity to praise the Minister of State in this House - I have done so in the committee, but it is appropriate to do so also in the Chamber - for her leadership on the issue of disability and making progress. Deputy Tully made a very fine contribution and certainly fulfilled her role as an Opposition Deputy. It was very interesting to listen to her. Notwithstanding all the points that were made and that are clearly outlined in the report, praise is due to the Minister of State.
The Minister of State began by saying the rights of people with disabilities must be central to all Departments.
She has heard me relay this story previously, which I will not dwell on, of the trip to the Netherlands some years ago and seeing so many more people with disabilities outside enjoying themselves, travelling around their towns and cities and between them. They were able to do so because the Netherlands takes transport serious the point of view of people with disabilities. While responsibility does not rest with the Minister of State’s Department, as a very strong advocate for people with disabilities, I am sure she will impress upon the Minister for Transport and the Minister of State at the Department the importance of putting disability front and centre of their thinking with respect to policy and funding when it comes to transport because getting it right is fundamental for all of us and how we live our lives. If we get it wrong for any cohort in our society, it is very difficult for them to live their lives whether through accessing employment, education, going to the shops or going to church. We have to get transport right from the perspective of people with disabilities.
When National Transport Authority, NTA, officials appeared before the committee recently, I took the opportunity to ask them what they were doing. They were at the committee for a reason, namely, to speak on the authority's role. They spoke about various different design issues with respect to the built environment, the provision of suitable buses, ramps and so on. It was all absolutely appropriate that they would do so. However, I made the point that for that cohort of people with disabilities who are dependent on mobility devices such as wheelchairs, the roll-out of the networks in our towns, villages and cities is critically important. It is wrong to say these networks are for cyclists. They are not for cyclists; they are for the people who are not cycling at the moment. They are for the people who could use those networks, including people in wheelchairs. That is what I witnessed in the Netherlands. The NTA’s role from the perspective of disability is to roll out these networks as quickly as possible. I do not pretend that is easy; there are huge political challenges because if these continuous networks that are separated from road traffic and connected in such a way that they are useful for people are to be created, then it is also about how street space is used. There are the challenges of where parking is provided, what to do with carriageways, whether footpaths can be widened and whether an active travel lane can be put in. These are very challenging tasks but it was important to impress on the NTA officials the importance of not only looking at niche areas when it comes to disability such as the provision of adaptive vehicles and so on but also the built environment itself. I raised continuous footpaths. Department of Transport officials were present and the Chair kindly wrote to them and impressed on them the rolling out a policy on continuous footpaths because if the footpath is dished every couple of metres that makes it a hostile environment for a person with a mobility device. That is critically important. As far as I know, there is not an appropriate policy in that regard.
Finally, I want to pay tribute to the late Bob Hannan, senior architect in Dún Laoghaire, who died just this week. I mentioned him earlier in the House because he was one of the key figures behind driving the coastal mobility route in Dún Laoghaire. It has been a great success for children in the community who can walk and cycle safely to school now and for everyone else. It has also been a great success for people with disabilities. It is a great legacy for Bob Hannan. He had a vision for infrastructure that is suitable for all cohorts of our society and before he died, he managed to see that through. Before he was involved in design of this kind of infrastructure, he was involved in housing and universal design. It was something he was very expert in and it is only right that we pay tribute to these kinds of people in our community who work tirelessly for all sections of the community in their professional work as well as outside it.
I thank everyone for their contributions. The programme for Government commits to the ratification of the optional protocol and the Government intends to fulfil it. Both the Minister, Deputy O’Gorman, and I have indicated that we are open to earlier ratification of the optional protocol and that the Department has commenced the necessary scoping exercise to ascertain the requirements for ratifying the protocol at the earliest opportunity. While the exact date for ratification cannot be provided yet, it is a priority for the Government to ensure that ratification takes place at the earliest date.
There was a question earlier, which I think may have been from Deputy Tully, that there may have been a missed opportunity when the EPSEN Act was being processed that the Disability Act was not also looked at. The Minister was very clear in our programme of work that the assisted decision-making Act was first, we were doing the Equality Act and then we would look at the next part. There was a strategy there and we wanted to look at the Equality Act first. That was a decision we both made and we will stand over it.
Everyone, including the last speaker, has spoken on transport. We all have different ways of looking at transport but if we do not get the built environment right first, it is very hard to take the next steps. I cannot recall where I was recently and I was asking how it worked. I think it was that the bus looks after the cyclist, the cyclist looks after the walker and then there is the car driver, so there is a type of hierarchy on the highways. It is about getting the built environment right. Deputy Leddin was so right in saying that and I am delighted that he is looking at the issue of continuous footpaths. It is one of the most challenging things for many disabled people living in their communities. While we are spending a lot at the moment and looking at the add-ons taking place, it is important to ensure that they back right to the existing footpath and making sure that it follows the universal design approach that is acceptable and flexible to all. I have to acknowledge the role that the Minister for Transport has played in enabling me to look at the issue of inclusive travel. Deputy Leddin and I have spoken about trikes. That is me dipping my toe in to ensure that people with disabilities can be an active participant whether it is along a greenway or in a local community. We have research from the Royal College of Surgeons in Ireland that has proves that young people and not-so-young people want the same inclusion opportunities as others and should be given that right. If we genuinely believe in aligning our Departments to the UNCRPD, we would also genuinely believe in investment in the trikes and in any family having the right to participate equally in their local community. We should be championing the wider footpaths and the extra space. It is not just a bicycle lane; it is far more than that.
By the same token, the Minister for Transport will support me in respect of the next door I will knock on, which I have knocked on it already, namely the NTA's. This is something that Deputy Wyne mentioned earlier. If we want bus operators to come on board with us, the most important issue is the low-level floor. However, only tour operators get grants for low-level floors. I do not know if Deputies know this.
There is a grant that enables bus operators to move to electric vehicles. The lower level bus operators do not get that grant because it is seen as a tour operator grant as opposed to a smaller bus grant. We need to look at that, to be honest.
This day last week, I visited the Harris Group on the Longmile Road, or whichever is the relevant road. Deputies know where I am talking about. I went out to see about the buses. The reason I went out there was because everybody says that there is only the capacity for one wheelchair on a mainstream bus or a 17- or 24-seater bus. In actual fact, with modern design, we can get four on. Those buses are able to take four wheelchairs. They are also able to provide charging for wheelchairs when they are on the bus. Those buses have the low-level floors. It is amazing where design and technology have gone. As a State, we need to catch up with that design and technology. The NTA needs to partner better with us to ensure that we do not have 54 buses parked up but can instead use our transport fleet better in the disability space.
There are many better ways to become more sustainable. In the Acts I have talked about, it is a matter of social enterprise. That social enterprise could wash itself through in about three years. By using the DART infrastructure and connecting to electric cables overhead, buses can be recharged. That is far above my pay grade, but there are great opportunities in that respect to allow us to look after the people who want their own lanes, as well as the more universal approach in that regard.
I absolutely agree about what can be done with this House. The Ceann Comhairle has led by example in ensuring we have an autism-friendly House. It was him and the Leader of the Seanad, Senator Buttimer, who led that. The changing places piece is a conversation I am having. Another place in this House that is a barrier is upstairs where the paintings of previous leaders are with the view across Merrion Square. There is a step down there so a wheelchair user can never get to see those pictures of the former leaders or the view of Merrion Square. One of the ushers has said that we just need the OPW to make a little bit of a ramp and we would have that issue sorted. That would take us to a conclusion with regard to the upper part of these Houses.
If I do not talk about Carlow for a moment or two, I will not be safe to get to the back door. Deputy Murnane O'Connor raised a number of issues relating to Carlow. One of the issues that everyone would agree with the Deputy about is in respect of assessments of need. The Deputy's colleague has left, but this is an issue that applies to everyone's county and constituency. It is a priority for me. There is no denying it or shying away from it. The issue is addressed in the roadmap. When we launched the progressing disability services roadmap, I mentioned that I am looking at a reimbursement scheme if parents look to go for private assessments. I am looking to see how to align that and tie it into the existing framework. Sometimes when you try to do something new, setting it up and trying to do it takes longer. I am trying to see if there is something I can align with the infrastructure that is already in place.
It is about ensuring a multidisciplinary approach that is acceptable to the HSE and the National Council for Special Education and that families do not have to part with money because the funding will be paid directly by the HSE to the provider, as long as that provider is within a secure structure and within the framework of the HSE already. We are probably already using many of these private therapists, as Deputy Michael Moynihan said. It is about ensuring we can speed up the process. Children need assessments of need. It would be wrong of me to say they need those assessments to access education but they certainly do for access to special classes. They need assessments for access to social protection and the carer's allowance. I operate in a siloed system where there is needs-based approach. There is not a needs-based approach, however, in education or social protection. I am trying to find a means to support families. The sooner we can get assessments of need out of the way the better. It must be about intervention. Children will only start to make progress thereafter. The piece of paper does not define their progress. It is about intervention and face-to-face time with a therapist. We need to get assessments of need sorted so that it is all about interventions. It is then that we will put the child at the centre.
I welcome the debate. I had a commitment to speak to representatives of an organisation who were before a committee. I apologise that I had to nip out in the middle of the debate. I commend Deputies on the earnestness and genuineness of the debate. We constantly see the challenges that are there for people with disabilities. We see the need in this report. It is stark and lays out the challenges that are there and considers what we need for people with disabilities to ensure they are as included as possible. It is about a coherent policy from the cradle to the grave. It is about a coherent policy from start to finish. At every juncture in the lives of people with disabilities, there must be a roadmap and help and support for them. We, as public representatives, see the challenges that are met by families, particularly at junctures when children are starting school or preschool, primary school, second-level school or are leaving school. We need to be holistic in how we approach the social model for providing for people with disabilities. We have to move away from the medical model. Maslow's pyramid of need came out during the war years. It included basic needs but also stated that everyone needs a progression to become a part of a community, to be wanted in a community and to have a sense of self-worth. We need that to guide the Joint Committee on Disability Matters and this House, and the decisions that are made by the Government. We must acknowledge the pyramid of need is out there. Everybody needs to have a sense of self-worth and a journey, and needs to be supported.
Families face a constant battle to get services. People in their 70s and 80s are looking after adult sons and daughters. They have given their lives to doing so. They are worn by the system. We must ensure that is not the experience of people as the generations go forward.
I thank the Government for allowing us to bring the report before the House and to have it read before the House. I also pay enormous tribute to my fellow members of the committee I am privileged to chair. It is only because of the gel within the committee that we can give a sense to people with disabilities, their families and communities, that we have their best interests at heart. We are banging a drum and need to bang it louder.
I thank the Minister of State for her time and effort, and her genuine concern about these issues. We will continue as long as we can to make a difference for people with disabilities.
Question put and agreed to.
Cuireadh an Dáil ar athló ar 6.18 p.m. go dtí 2 p.m., Dé Máirt, an 7 Samhain 2023.
The Dáil adjourned at 6.18 p.m. until 2 p.m. on Tuesday, 7 November 2023.