Oireachtas Joint and Select Committees
Thursday, 23 September 2021
Joint Oireachtas Committee on Disability Matters
Participation of People with Disabilities in Political, Cultural, Community and Public Life: Discussion
The Chair, Deputy Moynihan, sends his apologies as he cannot be here this morning, but he may join us remotely at some stage. Apologies have also been received from Senator Higgins.
The purpose of today's meeting is to discuss the participation of people with disabilities in political, cultural, community and public life. On behalf of the committee, I extend a warm welcome to Ms Renee Dempsey-Clifford, independent chairperson of the Disability Stakeholder Group, DSG, and her colleagues, Dr. Vivian Rath and Ms Annette Costello. I also welcome Councillor Carly Bailey from South Dublin County Council and Councillor Gabe Cronnelly from Galway County Council. The witnesses are all very welcome here this morning.
I remind members that they are only allowed to participate in this meeting if they are physically located in the Leinster House complex. In this regard, if members join the meeting remotely, I ask them to confirm that they are on the grounds of the Leinster House campus prior to making a contribution. I inform anyone watching this meeting online that witnesses are accessing this meeting remotely and due to these unprecedented circumstances, I ask that everyone bear with us should any technical issues arise.
Witnesses are directed that only evidence connected with the subject matter of these proceedings is to be given and are asked to respect the parliamentary practice to the effect that, where possible, 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. I wish to advise witnesses giving evidence from a location outside of the parliamentary precinct that the constitutional protection afforded to witnesses attending to give evidence before committees may not extend to them. No clear guidance can be given as to whether, or the extent to which, the evidence given is covered by absolute privilege of a statutory nature. Persons giving evidence from another jurisdiction should also be mindful of the domestic statutory regime. If witnesses are directed by the committee to cease giving evidence in relation to a particular matter, they should respect that decision.
Members are reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise, or make charges against a person outside the Houses or an official either by name or in such a way as to make him or her identifiable.
I now call on Ms Renee Dempsey-Clifford, Dr. Vivian Rath and Ms Annette Costello to make their opening remarks.
Ms Renee Dempsey-Clifford:
I am very privileged to be present here today with my colleagues to make a witness statement to this very important committee. I thank the committee for inviting us. I am the independent chair of the Disability Stakeholder Group, which is a voluntary group of individuals with expertise and lived experience of disability who are appointed by the Minister of State with responsibility for disability on foot of an open invitation process. The DSG is appointed on a three-year cycle and the current iteration is the fifth.
The DSG is not established to be a lobby group. Instead, members of the DSG are appointed to work in partnership with Departments to monitor the implementation of the national disability inclusion strategy, NDIS. This includes the opportunity to focus on individual issues, which is what we are here to do today. Through its actions, the NDIS supports progress towards implementing the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD. DSG members report regularly to the Minister on progress.
As outlined by the Vice Chair, two DSG members, Dr. Vivian Rath and Ms Annette Costello, are present here today and they will make specific presentations on their experiences on this important subject. In terms of the policy background, our statement today will focus on NDIS Action 29, which is to improve participation in public and political life, and Action 77, on being an active citizen, which both relate to UNCRPD Article 29 on participation in public and political life. The statement draws on the experiences of DSG members with accessible voting and the political representation of persons with disabilities.
There are more than 650,000 persons with disabilities in Ireland. Despite the size of the constituency, there is relative political silence when it comes to the matter. An analysis carried out after the most recent general election offers a snapshot of the reality for persons with disabilities accessing their franchise rights on an equal basis with others. Accordingly, I will now ask Dr. Vivian Rath of the DSG to present this analysis.
Dr. Vivian Rath:
I am a member of the Disability Stakeholder Group. Some 52% of disabled voters surveyed after general election 2020 reported that they faced barriers to voting. With Maria Ní Fhlatharta in the National University of Ireland, Galway, NUIG, I launched this survey following my own experience of voting in a corridor during general election 2020. We wanted to hear the experiences of disabled voters after the election. It is something that has not been done before. I quickly found out that my experience was not an isolated one.
Barriers that disabled voters experienced included inaccessible polling stations. Many disabled people were unable to vote in private, as ad hocarrangements were put in place. There was a lack of information in accessible formats. Some survey respondents reported not knowing how to vote, or not being able to vote or to follow electoral debates, as a result of the inaccessible information. There was a lack of personal assistants. In many cases, that was due to the election taking place on a Saturday. It was reported that some people had nobody to bring them to vote.
Of the respondents who used postal voting, 52% also reported facing barriers. It was reported on social media by disabled people that they had to vote in their car. My DSG colleague, Ms Annette Costello, has also experienced issues both with in-person voting and postal voting. I will now hand over to her to allow members to hear her direct experience.
Ms Annette Costello:
When I attended my polling station during the recent elections, I found that the wheelchair ramp fitted at the polling station was not installed correctly. Upon reporting this to the returning officer as a safety concern, I received a dismissive response and was told I was the only person who had complained about it that day and three other wheelchair users had already voted. In my experience, returning officers and polling station staff are not properly trained in disability equality.
This is a major concern. People are also reluctant to highlight issues that distort information in the public domain. As I recall, there was only one wheelchair-accessible polling booth at my polling station.
I and many other disabled people have also experienced difficulties with the postal voting system. Postal voting is often cited as a more accessible voting option for disabled people. However, the application process is unnecessarily complicated and based on a medical model of disability, requiring certification from a GP for the first application. On an annual basis, a written confirmation form must be signed, completed and returned to the local authority. However, local authorities require an original signed confirmation and will not accept it via email.
This process fails to recognise that the vast majority of disabled people will have their disability for life and it will not diminish. Disabled people can find access to a postal vote has been removed despite no change to their disability status, with this occurring due to a systems or administrative failure, which I have also experienced. In addition to the administrative barriers this presents, it also demonstrates a lack of respect and dignity for disabled people by requiring us to provide proof in order to access our right to vote time and time again with the postal system. The timelines for completion and return of a postal ballot must also be reviewed as they are more onerous than those for people attending a polling station on the day. A number of colleagues on the disability stakeholders group have informed both Dr. Rath and me of their difficulties in the Braille system during the general election 2020 vote.
Progress has nevertheless been made in accessible polling stations, and I am happy to acknowledge that. However, this progress is fragmented and inconsistent across the country. While correct installation of a wheelchair ramp is important, it must also be understood that accessibility extends further. The National Disability Authority published the accessible voting checklist 2015 to provide this guidance. We understand from meeting officials in the Department of Housing, Local Government and Heritage that this is sent to returning officers before each election. However, as demonstrated by our experiences as outlined today, problems persist.
Therefore, it is critical returning officers and all polling staff receive training in how to implement this guidance, as well as training in disability equality. An evaluation of the effectiveness of the accessibility measures in place must be carried out after elections and a complaints mechanism should be established to further safeguard the voting rights of disabled people.
The establishment of the electoral commissionis another very positive development. The DSG understands that one of its first tasks will be to carry out research into the postal voting system and how it can be reformed. It is vital that disabled people are consulted during this process. I will now hand back to my colleague, Dr. Vivian Rath, to discuss the issue of political representation of disabled people.
Dr. Vivian Rath:
As noted by Mr. Fergus Finlay during the week, this is not about disability but rather inequality. What we can discern from Ms Costello's comments, for which I thank her, is that we disabled people face inequality in our right to access our vote. As members are aware, public participation does not end with voting and this is also about active citizenship, having one's voice heard, seeing action and being involved in the community. It is about people feeling as if they belong. Article 29 of the UNCRPD also calls on state parties to actively promote an environment in which disabled people can participate in public affairs on an equal basis with others and to stand for election. The extremely low representation of disabled people in the Dáil and the Seanad reflects the inaccessibility of the current environment.
Disabled people face many barriers to candidature, including the extra costs of disability. There are accessibility barriers, including the unavailability of Irish Sign Language interpreters or personal assistants and inaccessible meeting venues, information and transport etc. There has been a failure by political parties to select disabled candidates and a lack of supports for disabled people to engage with local government structures, such as their local public participation network, PPN, as highlighted in a report by Wexford PPN recently. This leads to political invisibility.
To make progress in this area, we disabled people recommend that all parties undertake a cross-party political pledge to promote and support the election of disabled candidates. In addition, reasonable accommodation must be provided for disabled electoral candidates to remove some accessibility barriers. We must establish a fund for elected office to cover the cost of disability faced by disabled candidates. Similar funds were established by a similar committee in the UK.
At local government level we suggest that guidance and a bursary is provided to county councils to support initiatives that promote participation of disabled people in order to facilitate their active citizenship. Today, we, the disabled people, are sharing our experiences of being left off the decision-making table. By being left out, we do not have the opportunity to contribute to our own destiny. We are here, making recommendations on how best to move forward.
Following this presentation, some members may point us to the electoral commission but they too can bring about change. We want Oireachtas Members to lead by example and be the change they want to see. What steps will the committee members take to increase the number of disabled people engaged with political participation here in Ireland?
Ms Renee Dempsey-Clifford:
I thank Ms Costello and Dr. Rath. It is our general view that no party is against progressing disability rights but in our experience, there is not enough overt support. We are therefore pleased that this meeting is taking place today, for example. We hope very much that all the contributions presented today, including ours and the others yet to be heard, will advance this cause further and that the suggestions made, particularly regarding the cross-party pledge, which could be usefully developed and made on the International Day of Persons with Disabilities on 3 December, may be seriously considered. I thank the committee again for the invitation to participate and we hope our snapshot has been illuminating. We look forward to hearing the other speakers, as well as the question-and-answer session later.
Ms Carly Bailey:
I start by thanking the Vice Chairman and members for the invitation to contribute here today. I commend the Deputies and Senators who have engaged on these matters to date and who have taken the time to consider the submission I wrote for you all late last year.
I am a public representative who was elected as a local councillor in 2019 to South Dublin County Council. It was my first time to run for election and, as I am sure it was for all the members here, it was and remains a huge honour to have won the trust of the people in my local community. I work very hard every day to ensure the people I represent, including disabled people, have a voice at the decision-making table.
I am a disabled woman and members will have read in my submission that I acquired my disability during my 20s. It took me a long time to be able to accept this, to say it out loud and not to feel shame. As we all know, people with disabilities in the past were simply written off. They were segregated from society, left in the shadows and considered something of which to be shameful. The State supported this by providing institutions to hide children and adults that were considered "less than". The stigma remains to this day. While much has changed since those very dark days, moving from a medicalised system towards a more progressive social model, the stigma and the State continue to work to prevent disabled children and adults from accessing and participating with the world in a meaningful way.
I call this structural violence, which is defined as "a form of violence wherein social structures or social institutions harm people by preventing them from meeting their basic needs". I ask members to consider how they felt when I read this aloud. Did they agree or did they feel uncomfortable or defensive? I can assure the committee that disabled people and their families feel this structural violence each and every day.
We feel utterly let down by the State and I will use my time here today to outline why.
How do we know that the State is complicit in structural violence against people with disabilities, who make up around 13.5% of our population? We have any number of examples, and I will outline some of those now. The first relates to the UN Convention on the Rights of Persons with Disabilities. Ireland signed up to that in 2007, yet only ratified it 11 years later in 2018. There are issues with a number of pieces of existing legislation that either require significant review, such as the Disability Act 2005, or Acts that are not yet fully implemented, such as the Education for Persons with Special Educational Needs Act 2004. The optional protocol remains unratified. It, crucially, offers individuals a complaints mechanism which would allow them to make a case before the UN to determine whether or not the State is living up to its commitments under the convention. Without the optional protocol, we have no way to hold the State to account. The optional protocol cannot wait, and I urge the committee to consider the impact this is having on children and adults with disabilities across the country.
Another example relates to diagnosis and service provision. The new assessment of needs system is not fit for purpose. I have been through this process under the old system with my son. We had to fight for proper diagnostic testing which concluded, eventually, that my son is autistic. Throughout that time, I was advised that a diagnosis was not important and that I was "labelling" my child. If my child hurt his arm, I think we would all agree it would be better to know if the pain was caused by a sprain or whether a bone was broken. The doctor would order tests, including an X-ray, and a sprain would be treated very differently to a fracture. Tests and treatment, whether that be a cast or even surgery, would all be carried out very quickly. However, when it comes to disability, whatever form that is in, we are told that there is no need to get a full picture. I spent years researching online before we finally got a diagnosis. With a diagnosis, we were able to understand his sensory issues around noise, food and touch, his core weakness, his executive functioning challenges and why he feels anxious and overwhelmed in the classroom. Knowing this helped us understand our son so much more. We were able to know what his needs are. This is not "labelling" our children. The idea of labelling is rooted in stigma, the thought process being that the diagnosis will follow my child, that somehow we should be ashamed of it or that it might hurt him down the line. It will only hurt him if the State continues to do very little to combat this stigma. While diagnosis is crucial, it would be remiss of me not to talk about the lack of services available to our children.
My son was referred for an assessment of need in 2014. By the time he completed that process, like so many others, he had aged out of early intervention. Services given during that crucial time have a much greater chance of being effective due to brain development and plasticity children experience during those years. He missed out, like thousands of children who are left waiting while not enough therapists or resources are provided. My son was then added to the school age team in 2016. He is still waiting to be seen five years later. He was first referred into this system at the age of three. He is now ten years old and has yet to meet anyone from Chamber House. Worse again, we were unable to afford much private therapy throughout this time. I cannot begin to describe how devastating it is to watch my smart, funny and kind little boy grow up, knowing that he may never reach his full potential because the healthcare system in this country is abysmal and we did not have the disposable income necessary to pay for private therapy. There are thousands of families just like mine across the country. I know the members of the committee hear from them every day. The members listen to our stories when they knock on our doors, and yet here we are. I hope the committee will give this area significant attention as its work continues.
Another example of structural violence relates to access to education. When we consider Article 24 of the convention, there are too many examples where the State is letting us down. Children with disabilities and additional needs face barriers to education from the very start. While some improvements have been made in early education, over 500 children were unable to access a primary school place suitable for their needs in 2019. I have dealt with families whose children are six, seven and eight years old and are desperate to find a school place for their children, denied over and over again. We have no idea how many children are on reduced timetables and we know that too many children are without suitable in-class support, with little or no access to a special education teacher or special needs assistant, SNA. Too many schools still have no special classes set up. A report published yesterday by the National Disability Authority, NDA, and the Economic and Social Research Institute, ESRI, tells us that when disabled children makes it through their school years, there are still too many barriers in place for them to transition from post-primary to third level education. How can we expect our children to engage and participate in the world without access to education?
Another example relates to income for disabled people. In relation to social welfare payments such as the invalidity pension, disability allowance, primary medical certificates, domiciliary care allowance and carer's benefit or allowance, the State in most cases offers a means-tested payment that is below the poverty line, which also fails to consider the additional costs that having a disability can incur. When the pandemic hit in 2020, with hundreds of thousands of workers unable to work, the Government provided a payment of €350 a week. It was understood that this really was the bare minimum needed for people and families to cover basic necessities. However, many other cohorts, including disabled people, did not see any rise in their payments. I do not know if anyone here on the committee has ever had to survive on payments of just over €200 a week. I have, for a very long time. During the 2008 crash, my husband lost his job, through no fault of his own. I had recently been diagnosed with otosclerosis and was unable to access audiology services. We then experienced cuts to our social welfare payments, rather than increases. We could not manage on such a low income, often having to choose between heating our home or paying the electricity bill. We have spent many years living in poverty, as have our children. Poverty grinds you down. It is death by 1,000 cuts. With no end in sight and the State failing to provide any safety net for families like ours, we ended up losing our home, something I never thought could happen.
Poverty negatively impacts both the individual and society. There is a wealth of evidence to demonstrate that countries that work hard to eradicate poverty do better more generally. Poverty is a social problem created by the State and can be tackled with interventions and resources for both the individual and his or her local community. Despite this, too many disabled people experience poverty. We know that one of the most effective ways of reducing poverty is access to education and work. Article 27 of the convention recognises the right of people with disabilities to work on an equal basis with others. However, Ireland has one of the lowest employment rates for people with disabilities in the EU. When an intersectional approach is taken, imagine how much more difficult it might be to access employment if someone is disabled and is also a person of colour, a migrant, a Traveller, a woman, a queer person or an older person.
I urge the committee to give strong consideration towards the provision of personal assistants, PAs, for disabled people. A PA could help empower the disabled person, provide them with opportunities to interact with the world, possibly engage in education and may even allow them to enter the work force if they want to. A PA could help provide autonomy, independence and freedom to a disabled person and is very different to home services. This is especially important when considering the Assisted Decision-Making (Capacity) Act 2015, and could be a real game changer for thousands of disabled people.
I ask all members of this committee to consider how their work and recommendations can make meaningful and lasting systemic change, to move the State from oppressor to ally and to ensure that the rights of disabled people under the convention are centred, respected and protected by the State. Policy must be poverty-proofed and an intersectional approach will ensure that all people are considered when looking at policy changes. I would also ask the committee to please listen to disabled people and involve us in this process as much as possible. I thank all members of the committee for listening and I am happy to answer any questions they may have.
Mr. Gabe Cronnelly:
I thank the committee for offering me the opportunity to speak before it today. For those who do not know me, my name is Gabe Cronnelly. I am married to a wonderful woman, my better half, Raphael. I am a father to three teenage boys and live in a remote and rural part of Galway. I have been an active member of my local community for over four decades and have worked in both the private and public sector. Since 2014, I have been a serving member of Galway County Council for the Athenry-Oranmore municipal district. These are just some of the proudest milestones I have achieved in life thus far.
However, it has not all been plain sailing. Eleven years ago I suffered a life-changing injury that resulted in the amputation of my right leg. An accidental discharge of a firearm by a friend during a cold winter’s day left me in a pool of my own blood out in the middle of a bog in Athenry. There were 13 operations to save my leg. The 14th was to amputate. For many weeks and months after, I was in total despair. I could no longer work at what I used to do.
I felt as though I would be a burden on my family for the rest of my life. Every type of negative thought one could imagine entered my mind during those early days.
However, through the support of family, friends and kind strangers, I found the strength to see the positives in my life. I began to see the opportunities, as a disabled person, to get involved in local community groups, disability organisations, charities and fundraisers. As a person with a disability, I decided that I was not going to allow my disability to hold me back but, rather, that it would spur me on. I turned my disability into my ability to get things done. I became involved in the Irish Wheelchair Association and in Paralympic sports and more deeply involved in my local community and sports clubs to further encourage and support young people with disabilities. I joined Embrace, a survivors network for those who suffered death or disability through farm-related accidents. I devoted more time to groups such as the Athenry Men’s Shed and the Galway Parkinson's Association. All of this helped me to become fit and healthy again, both mentally and physically.
When I look back over the past decade of my life, two things really stick out for me. The first is a sense of belonging. Having support groups and various organisations to contribute to, but also to lean on in times of need, really helped me through some of the hardest times of my life. The second is that I remember when I spoke about strength and that I had to muster up the strength to try to live an independent life.
For too many people in the disability community, independent living is a distant dream and untenable prospect and that is not okay. For too long, our disabled brothers and sisters have been neglected and pushed aside by our broken political institutions. At present, disabled people make up 13.5% of the population and that is expected to increase to approximately 20% by 2026. Our voices must be heard at local level and national level. Currently, only one Member of the Houses of the Oireachtas has a visual impairment. There are gender quotas in place. I would like to see quotas extended to disabilities to achieve a sense of belonging for disabled people. We too should have a reserved place at the decision-making table.
The microaggressions by the State are constant in terms of the inadequacies of public transport for disabled people, the inaccessibility of many buildings and footpaths, the disproportionate levels of poverty affecting people with disabilities and the major challenges facing disabled people in the context of access to voting. The right to vote should extend to everyone, including people with disabilities, such as me. There are serious concerns that people with disabilities are being challenged in polling booths when presenting alongside their assistant or carer. There have also been concerns raised regarding inaccessible entrances to polling stations for wheelchair users, which has created a sense of further exclusion for disabled persons. Serious changes need to be made to ensure people with a disability are not disenfranchised from exercising their democratic right at every opportunity.
My experience of living with a disability has opened my eyes to other marginalised groups with which I regularly work, such as Traveller and migrant groups, in my role as councillor. It is through this exposure to people who are different from me that I have become a mentor with the Immigrant Council of Ireland's internship scheme. I would like to see such a scheme put in place for disabled people. We need to make space for everyone who has a desire to be involved in local and national government. The political representation of disabled people has not improved substantially since the foundation of the State. Disabled people are left wondering whether the policies that affect them could be a little different if they had more of a say. Indeed, such internship schemes could and should be extended to all marginalised groups to achieve a Dáil or Seanad Chamber that looks a whole lot more like the society it governs.
There are a multitude of issues that are discouraging or downright preventative for a political candidate in my position, such as the difficulty in trying to knock on up to 2,000 doors during local elections with a disability, the need to get up and down ladders while putting up posters, attending functions that are not always disability-friendly and planning to get to and from meetings using insufficient public transport. In addition to quotas and internship schemes, funding should be made available to remove these barriers to people with disabilities standing as political candidates.
It can be difficult for people with disabilities who have entered politics here or in Britain to get their voices heard. There is a lot of patronisation and a general belief that only the needs of disabled people are being considered. This is a huge loss to the system because political parties, council chambers, the Seanad and the Dáil are missing out on the experience of including disabled people. This would be valuable to them in terms of policymaking. People with impairments bring solutions to their own difficulties, so not to involve them is a massive loss to us all.
The party whip system further prevents many disabled people from speaking the truth when they disagree with policies that affect them. Impaired people and disabled campaigners, therefore, may fear they will get lost in the party system, with no avenue to ensure their perspectives are fully considered. We need to ensure that diversity and inclusion are at the core of all decisions being made.
I came here today to share my story with the committee in order that it can learn from my experience. I experience my day-to-day life as an amputee and I am here to rally against the marginalisation and microaggressions that the State forces on me every day. I want to raise up the voices of people just like me, and those of other marginalised groups, in order that we too can have a seat at the decision-making table. I believe true change can only come from changing the system and the system has so far failed to meet my needs as a disabled man. If we are to meet the needs of people like me in the future, we need to take progressive steps to realise this change. I thank members for their time and for listening to me.
I thank Councillor Cronnelly. We have received apologies from Senator Seery Kearney, who unexpectedly cannot attend. I passed on apologies from Senator Higgins at the start of the meeting but she is joining the meeting remotely. I welcome Senator Ruane, who is here to ask questions on behalf of Senator Higgins. Am I right in thinking that Councillor Bailey is under a little bit of time pressure? If there are questions specifically for Councillor Bailey, we will take those questions first. I will then go back to the rota of speakers to ask questions of our other witnesses.
I thank our guests. I have a couple of questions for Councillor Bailey that are also for Councillor Cronnelly, but I will just ask them of Councillor Bailey for now. She spoke of the use of reduced timetables creating a barrier to disabled children's equal participation in and access to education. What policies and oversight does she believe are needed to ensure that reduced timetables and the use of isolation, seclusion and restraint in schools and other settings do not disproportionately impact disabled students and undermine their right to full and safe participation in education and, beyond that, in all aspects of school life? In the context of our discussion of participation in education, I do not know whether Councillor Bailey is aware of the recent decision to treat children with additional needs or disabilities slightly differently with regard to track and tracing, which is another participation problem relating to education. Right now, the Department of Education is saying that children with additional needs will be tracked, traced and sent home if they are a close contact but kids who do not have additional needs can remain in the classroom. That is another participation problem and seems to be quite arbitrary.
Ms Carly Bailey:
We are hearing stories regarding reduced timetables, kids being kept in isolation, restraints and all sorts of things.
One of the main issues is the fact that we do not know. That is the answer. There is no record being kept of, for example, how many children are on reduced timetables. Why is that? Is that in the best interests of the child or is that down to a lack of resources from the perspective of the schools? I was at a meeting of the Children's Rights Alliance recently where there was a discussion about that very issue. A review is being undertaken at the moment. We have been assured by the Minister that the findings of that review are due to be published shortly. It is not clear at this point what the recommendations on foot of that review will be. That is going to require engagement from a number of stakeholders. I see in my own school and in many others across the country that there simply are not the necessary resources or training for teachers in mainstream classes, never mind special classes. The resources are simply not there to be able to help them get ahead of what they would call challenging behaviour. Interventions before a child becomes completely overwhelmed often can be the difference between that child becoming overwhelmed or not becoming overwhelmed but staff do not have the time to be looking out for signs or indications that the child is getting overwhelmed and stressed. It is going to be important, whatever happens, to centre the child if it is in the child's best interests. I am not entirely happy that is always the case at the moment. Schools are, for the most part, doing their absolute best but they are stretched beyond recognition.
I am concerned and worried about the new, front-loaded systems that are being brought in. Many schools and parents are of a similar mind on that issue. It is going to be based on a profiling of the school that does not take into account individual children within the school. That really needs to be looked at. The review itself will be interesting. There is a role for the committee to look at that issue as part of its work to ensure, as I say, the child's interests in terms of what is centred here. We must have a record of what is happening is real time and must not make the whole process completely burdensome in terms of administration for schools. The schools administration system is hard enough and is more difficult now that we have Covid-19 on top of it.
I will talk about the distinctions that have been made between children in special schools and those in mainstream schools. It is not clear why that decision was made. I know this issue splits parents, some of whom feel it is the right thing to do and that there should not be contact tracing unless a child is showing symptoms. It is really important that our children are in school, particular those with additional needs and those who come from more disadvantaged areas. Those children have already been hit more heavily by Covid than most groups. The rationale for making the distinction is not clear. There can be other comorbid issues going on with a child with disabilities and perhaps the Department is concerned that such a child would be more susceptible to illness. The rationale is not there and it would be good to find out what that rationale is. It is also important to talk to the schools and the parents to get a sense of what they feel is the right thing to do here. The problem is that rules are being made by people at the very last minute and loaded onto the schools. The schools are overloaded with information and that makes it difficult for a school to make a case as to why that is perhaps not the best way of doing things. I hope the committee can have a look at those things, can see whether we can tease those issues out further and make the situation better if we need to. I hope that answered all of the questions the Senator asked.
I thank the Vice Chairman, who is doing a great job. I congratulate all our speakers. Councillor Bailey mentioned the assessment of needs, the time it takes for assessments to be made and the delay and frustration involved. She said she has to fight for everything. I hear the same thing every day of the week in my constituency office. Parents of children who have issues are trying to find the best way forward but the system seems to be tied up in the system as opposed to tied up with the child. That is one area I will be working on with the Minister to try to get more changes. The management structure has changed in Galway, where teams have been created. However, the same people are being dished around in a different way and we do not have enough resources. If Councillor Bailey has any other ideas on how that should be done, it would be appreciated if she would send them to us.
I also raise the matter of disability payments. I would welcome Councillor Bailey's views on whether they should be tailor-made. The payment Councillor Bailey might get could be different to the payment Dr. Rath would get because of their different needs and wants. There are additional costs involved in being a disabled person and that should be reflected in the supports that are given. I would welcome any comments or ideas Councillor Bailey might have, even if she does not share them today when I know she is tight for time.
I will have questions for our other guests later. I say "Well done" to Councillor Bailey. It is important that she continues to liaise with us as a committee on all of these things.
I commend Councillor Bailey on her contribution and on mentioning so much of her personal experience. I can relate to an awful lot of what she included in her contribution about her experience, not only because my youngest daughter is also called Carly. The councillor spoke about structural violence and I admit that it does provoke a strong response, only because I know it to be true. I have first-hand experience of the frustration of having to wait an unacceptably long time for an assessment of needs for one of my children. I know only too well how challenging that experience is.
I faced many challenges in going from the dole to the Dáil and navigating through that first year, in particular. Councillor Bailey has managed to secure a position in the public sphere. I know first-hand what an uphill battle that must have been. Does she think there is political will to implement something like the quota system that was mentioned? I am excited about that idea. Does the councillor believe that needs to be mandated across all parties and legislated for or should individual parties define their own inclusion strategies? Does she believe there is a gap that local authorities should be filling in terms of the UNCRPD and its implementation? I think we can all agree that since Ireland signed the convention in 2006, progress has been painfully slow and has primarily centred around the capital. Does Councillor Bailey believe that local county and council-based work could expedite the protections and rights enumerated in the convention coming to fruition?
Ms Carly Bailey:
That is no problem. Deputy Canney asked about the assessment of needs, the need to fight and whatever else.
It is a very difficult process. The reason it has been changed is because under the Disability Act, the assessment of needs is supposed to be done within a six-month period. The difficulty around that is instead of arriving at a diagnosis or understanding better what is going on with the child, the legislation is clear in that what has to be done - and all that has to be done - is understand what the child's needs are. Many children are getting an assessment of needs done, potentially even within the time limit, although there are still massive delays in many cases, which does not outline whether the child is autistic, has attention deficit hyperactivity disorder, ADHD, or whatever it might be, but simply states the child has needs and will be referred to either a multidisciplinary team or for speech and language or occupational therapy. It does not give a clear picture of what is going on. The system tries do that as quickly as possible and then one is moved onto a waiting list. Essentially, the idea of being able to come to a diagnosis has been got rid of. The legislation, as laid out, is being met. One gets moved onto a waiting list and then, for the most part, nothing happens. One is just sitting there waiting and ageing out on early intervention and moving to the school age team.
I want to talk about a couple of parts to that issue. As I said, diagnosis is really important but so too are the services. There is no point in having a diagnosis and then not receiving the services one's child needs, as outlined in the service statement. What has happened and what we are finding, setting aside Covid-19, is staff were being redeployed from services to the assessment of needs, in order to try to get that through more quickly and then there are even fewer therapists left at the end of it, to help the child out when he or she has come through that process. The committee could look at that to see what has happened.
Obviously, at the very beginning of Covid-19, we really did not know what was happening. The priority was testing and, wherever possible, contact tracing. A number of staff across the public sector were redeployed and while I will not say after things calmed down but once we got a better handle on them, instead of advertising for contact tracing staff, disability services and dental staff continued to be used. The two areas that already were significantly underfunded and under-resourced before Covid ever struck were further disadvantaged because they were being used to continue to help fight the good fight against Covid, instead of people being hired to do those jobs. I do not know if everybody is back from redeployment but we already had massive a waiting list and 18 months later, that waiting list has become such that I just do not know when my child or thousands of others will be seen.
We were told that, especially around Dublin, there would be a reconfiguration of disability services. I have heard that for the past three years and nothing is happened and that was before Covid ever happened. I would love the committee to understand what has happened across Dublin and, potentially, other parts of the country. I am not sure about that. What has happened around the reconfiguration of service providers? Where has that gone wrong? Why has that stalled? What has happened? We do not get any information. Please do not focus only on assessment of needs. It often gets the most attention but there is simply no point in having a diagnosis if one's child still is not able to access the therapies and supports he or she needs to help the child understand his or her world better and come through challenges he or she might face.
I am not naive enough to think payments being more individualised is even possibly something that could be on the table. However, there has to be some kind of movement around figuring out extra payments, at least to cover the extra cost of disability. That could include things such as the heating having to be on longer, electricity for oxygen tanks or whatever else. There are loads of different examples and the stakeholder group would probably be well able to provide those.
The extra costs are real, even those such as travelling to hospital appointments. My Dad is also disabled and is a wheelchair user. He has spinal and heart issues and has been going to different hospital appointments. We looked at the past few months during which he had nine appointments, seven of which were in Dublin, because he has to use specialised services. I would be the first to say that I want my Dad, or anyone I love, to go to somewhere that has the necessary experience to be able to treat those conditions but he is not getting anything towards the cost of his diesel to get up. He needs my Mum to come with him because he needs someone to push around a wheelchair if I am not available. We worked out that each trip, including tolls and the rest of it, costs at least €50 and that does not include things such as a cup of tea or lunch. He had a number of those appointments and many people have to visit their medical provider quite frequently, especially when there is a disability or an ongoing illness.
There are many different ways of looking at what those extra costs are and how we can meet them for people and not just after the fact. My Dad is in receipt of an invalidity pension. Very little is coming in to him and yet probably half of his invalidity pension was spent on diesel over the past couple of months. It really needs to be looked at how we expect anyone on a disability to manage all of that on just over €200 per week. It is just not feasible. Yes, things should be more individualised. Is that administratively possible? Probably not but there could be ways and means of looking at that.
On the uphill battle, I fully support anything such as a quota system. The only thing I will say is very often, when we talk about quota systems, especially when we have one that is trying to have more gender balance, the first instinct is to go into the 30% or 40% quota for women. We still have 60% or 70% on the other side. If we are doing quotas and whatever that may look like, it has to be expense of the other side and not at women's expense. That is a really important point to make, but I fully support it and I think parties can and should be doing much better. I make no bones about how being open about having a disability is a big deal. I am sure Councillor Cronnelly would agree with me on that. I am in a slightly better position, because, mine is the hidden one. Unless I tell, one will not necessarily know about it. I very much appreciate the privilege of that. Something could be done about that.
It is also all well and good to have political parties decide to do more about it, and they should, but let us understand the barriers to running for election, which I will leave for Councillor Cronnelly to talk that afterwards, and those once one gets there. Let us say one is successful in becoming elected as a councillor, as I have been, or in getting to the Seanad or the Dáil, are those settings accessible? Are they set up in such a way that it is possible for one to participate, rather than being there as a token? I find it very difficult in the local authority. Work is under way, although there has been no consultation with me as to what my needs might be, but I could not hear anything in the chamber. The ceiling is very high and the microphone system is very old. I have struggled with that time and time again. Covid has come along, we have moved online and suddenly, I have no problem. I can hear everything, participate, get there and attend all the meetings.
I appreciate there is a sense of not wanting to move towards that type of thing and of wanting to get back to the chamber. I know it is on the programme for Government, but a hybrid system will be a huge game changer for so many people. One wants to be there and attend but there definitely will be times, especially for disabled people, when one simply cannot do so but one could attend online. It is as simple as that. I strongly urge the committee to look at that because that would be a game changer for disabled people, parents and all sorts of different people who, in terms of their jobs and so on, might not have the same flexibility to take on becoming a local councillor as others might.
People who are self-employed can fit that around their job and set their own hours. For people like me who are in regular work and do not have the same flexibility, being able to attend meetings online would make a massive difference. They are some of my thoughts on this issue and I am happy to contribute further on that.
Dr. Vivian Rath:
I want to add to the point raised by Councillor Bailey on the supports provided. One aspect that would be helpful, which was a recommendation we made, is to ensure reasonable accommodations are fully implemented for disabled candidates, as well as for disabled Deputies, councillors or anyone in a representative position. Currently, that is not really happening. It is certainly not happening for candidates. Reasonable accommodations are provided for under the legislation. The structures are already in place; it is just not happening. Reasonable accommodations provide supports to help disabled people engage fully in the workplace, school or other environment. It is only right and just that those same reasonable accommodations are allowable and fully implemented for disabled people. It is the same issue, as recently occurred, with Deputies or Ministers seeking to take maternity leave. We need to see the mainstreaming of these services across all parts of our services, whether people want to be a county councillor, be fully employed or be in school. It can be done very easily. The Oireachtas committee could have a big role to play in moving that forward. We laid out some of the steps in our presentation, to which Councillors Bailey and Cronnelly have highlighted the barriers. They are steps that the committee could take now and then look back on as successes. It would help and support the voice disabled people.
While I spoke out of turn, it was important to highlight that those structures are there but are not being implemented. I thank Councillor Bailey for her contribution on that also.
Senator O'Loughlin and Deputy Cairns have both indicated they wish to ask Councillor Bailey a question. However, I am conscious of time and the fact that many witnesses have not had a chance to speak or answer questions. I also want to give every member an opportunity to ask their questions and receive a response. Therefore, I ask Senator O'Loughlin and Deputy Cairns to ask their question quickly, and that Councillor Bailey respond in writing, if the question has not already been covered in a previous reply. We will then return to the speaking rota. I remind members that they have six minutes each to ask their questions or make their comment and to allow for an answer. We need to stick to this timeframe in order to allow everybody the opportunity to speak.
I will be brief because much of what I wanted to say has been covered in Councillor Bailey's response. I thank her for providing a perspective from three different generations and three different aspects of disability. I completely agree with her in supporting people with transport needs in travelling to important medical and health appointments. It is an area for which we have to look at putting services in place. I also agree with the intervention, as outlined by Dr. Rath, in the area of reasonable accommodation. I recall being quite shocked when Brian Crowley, a member of my political party, was appointed to the Seanad. He was the first person elected with a disability and ramps had to be put into the Seanad Chamber. Seán Connick, also from my party, was elected in Wexford. We have not had anybody with a physical disability, apart from Senator Conway, elected since. It is wrong and we need to address this.
I was concerned by what Councillor Bailey said in terms of the assessment of need, about which I will make two points. I know the Minister of State, Deputy Rabbitte, put a major effort and significant resources into what, at the time, was considered as a postcode lottery in terms of getting assessment of need. In the past 12 months, that has come down by 92%, which, in my opinion, was a big move. However, Councillor Bailey has said that this is not making a difference on the ground in terms of interventions for the children. My second point is on the reduced timetables that Councillor Bailey spoke about. Senator Ruane and I did a lot of work on this in the education committee and made strong recommendations on it. Last week, the Minister for Education brought out strong recommendations that will be in place from January of next year. These include monitoring, which Councillor Bailey mentioned earlier. We found it was important to note that there was no record or monitoring of reduced timetables particularly impacting children with special needs and children from Traveller backgrounds. In addition, a requirement should be put in place whereby Tusla should be involved and have to be notified if, in the most extreme of situations, reduced timetables are introduced, and parental consent. I believe those recommendations were strong and took on board the recommendations of the all-party education committee. Does Councillor Bailey think that will make a difference to it?
My question is for Councillor Bailey and for other witnesses. I thank everybody for their contributions. One of the matters that has been raised at every committee meeting, including this one, is the ratification of the optional protocol of the UN convention, and that it obviously needs to be done urgently. Dr. Rath asked what we as Oireachtas Members will do. I reassure witnesses that, as a committee, we have agreed to formally push the Government to ratify the optional protocol immediately. That is just one action we can take; there are obviously many more also.
Dr. Rath also suggested that all parties should take a cross-party pledge to promote and support the election of disabled candidates. Councillor Cronnelly spoke about gender quotas. I am a supporter of them. When considering who is elected and the demographics thereof, ultimately, the buck stops with political parties in regard to that. I would like to hear from the stakeholder group and from the councillors. What form should that cross-party approach take? What should and could parties do? We could then bring their suggestions back to our political parties to improve participation.
I am sorry to interrupt Dr. Rath, but I ask that we return to our speaking rota. We can then deal with any questions raised. I am conscious of the fact that people have indicated to me that they are under time constraints. I will take speakers in order, and any questions not already asked which you wish to answer, you can do so at that stage. I call Senator Ruane to ask her questions first because I know she is under time pressure.
I thank the Chair for allowing me the time to speak. I will ask three or four questions first and indicate who they are for. I ask that witnesses take note of them in order for them to come back to the question, as the timeframe is quite small. If they need me to repeat anything, they can let me know.
Dr. Rath referred to the survey he carried out with Maria Ní Fhlatharta following the 2020 general election. It found that 52% of disabled respondents had encountered barriers to voting. Does Dr. Rath believe there are issues with how we currently evaluate voting accessibility and that it does not tally with disabled people's actual experiences? If so, how can these concerns be addressed?
My next question is directed to all witnesses. Repeated studies have shown that access to education and participation in all aspects of community life is an essential foundation for disabled people's full participation in public and political life. While a handful of representatives across Europe have built a platform through disability rights work which has allowed them to enter politics, many of the traditional routes into politics are still unavailable due to poverty, which Councillor Bailey spoke to extensively, social exclusion and physical access barriers, which have a direct impact on the under-representation of disabled people in public office in all countries, including our own.
Councillor Bailey touched on the broader context in her presentation and on the exhausting administrative and psychological burden placed on disabled people by a labyrinthine application process and our current adversarial system when it comes to accessing supports. What role does this broader social exclusion and difficulty in accessing information about available supports play in hampering disabled people from political participation?
My next question is for Councillor Cronnelly. What supports are in place to assist disabled people to register to vote in their local authority area should they encounter any barriers in doing so? Should their local polling station be inaccessible to them, disabled voters have the right to petition the returning officer for permission to vote at another polling station in the constituency. Is he aware of any targeted resources to ensure that local authority voters are aware of the rights they have in this regard? Are supports available for those who may face challenges in submitting the petition?
I have one more question that is directed at all witnesses. Means testing and other restrictions around disability-related supports and payments have been highlighted in this committee session, as well as in previous sessions, as creating practical barriers and having a chilling effect on disabled people's equal participation in many areas of life, from education and employment to relationships and choices over where and how to live. Could any of the witnesses speak to any issues they have encountered in their work where the current disability support system actively discourages disabled people from full participation in political and public life?
Mr. Gabe Cronnelly:
Regarding the last question from Senator Ruane about disabled people registering to vote, unfortunately, as people with disabilities, we have to go around ourselves to people with disabilities that we know to make sure that they are registered. That is part of the failing. It should be advertised in primary care centres, doctors' surgeries and so forth, where there are people with disabilities, as well as in schools. There are also young adults who are reaching voting age, for example, in the migrant community and in the Traveller community. They are allowed to vote in local elections but not in general elections, so we do not get diversity across the board.
I am sure Councillor Bailey will agree with my point on the means test. Means testing for medical cards and so forth is a stumbling block for representation in politics. One's disability does not change, regardless of what work one does. If one goes into work and one's threshold is above a certain amount, one loses one's medical entitlements. When one loses one's medical entitlements, all one is working for then is to pay for one's disability, which is wrong. It is a violation of human rights. As Deputy Wynne stated, that is structural violence of the highest order.
When one goes to an assessment, one is staring at a clinical sheet. I speak for myself as an amputee. What works for me does not work for somebody else. It is the way that we deal with things. The assessment should be broadened to individualise the disability. That is part and parcel of what the UN Convention on the Rights of Persons with Disabilities should do. This goes across education, school, work and so forth. One must give the person with a disability the tools to be fully inclusive. The expertise they have, due to the challenges they face, should not be dismissed anywhere. Again, I can only speak for myself. When one encounters trauma and acquired disability, one has seen both sides of the spectrum, in going from being an able-bodied person to a disabled person. The current structure for those who are called "disabled people" is enabling disabling. Why are the people themselves who have disabilities not asked what way they want to be described, what they want and what they require? The information should not be dismissed because it does not fit on the page. We are all individuals. The needs of a disabled person are a little bit more complex and we need something tailored to suit each and every one of us. There is something wrong if one has to work to pay for a disability, for example, when one goes over a threshold for something or other or there are increases in social welfare payments and that excludes one from something else. One's disability changes as one gets older, but one's entitlements do not. When a person is younger and more able bodied, he or she can do certain things but as he or she gets older, it becomes harder with a disability as the disability is a bit more degenerative in respect of the person's capabilities. They do not change with it. We must start taking an individualised approach to assessments and all along the line to suit each person rather than using a list that is created by an able-bodied person who does not understand disability.
I will move on to Deputy Murnane O'Connor. A number of witnesses have indicated that they wish to speak, but time constraints do not allow for that to happen. As the meeting proceeds, I will take the witnesses in the order in which they have indicated.
I thank the witnesses. I apologise as I was in the Chair for a while and I was coming and going. I read the information in the submissions that we are all aware of. It is like everything in life, unless you or a family member is in that position, you do not realise that the system is not functioning correctly. That is something we must address. We have an excellent Minister of State, Deputy Rabbitte, who has responsibility for disabilities, but my biggest concern is that in recent months part of her remit was to be with the Department of Children, Equality, Disability, Integration and Youth. However, she is still in the Department of Health under the Minister, Deputy Stephen Donnelly. I am very concerned about that. I ask the committee to write today to the officials in the Department of Health asking when the Minister of State, Deputy Rabbitte, will come within the remit of the Department of Children, Equality, Disability, Integration and Youth. That is so important. Because she is being moved to a different Department, we must also ask what her exact functions will be and what we can do to help. This will be a big step but it has been going on for too long. It is not acceptable at this stage that she is still under the remit of the Minister for Health. We must get clarity on the situation. I ask that we seek clarity, get the date and find out what exactly is the function of the Minister of State, Deputy Rabbitte, and what we can do to make sure that we give our full support and get the matter sorted.
Some of my questions were answered. I read in the information that more than one in four people living with a disability do not use public transport due to reasons of accessibility. In my constituency, it is only in the coming weeks that the train station in Carlow will be wheelchair accessible. That is not acceptable. We are living in 2021, yet we did not have a wheelchair-accessible railway station in the main commuter hub of Carlow. That is such a big issue and we must address it.
Polling booths were a big issue during the elections, especially for people who were visually impaired. We must make sure that we address the matter. Another issue I am working on is the fact that Carlow Garda station is not wheelchair accessible. These are things that should not be allowed to happen. We on this committee should not allow that to happen. These are the areas on which we need to focus. Previous speakers such as Councillor Bailey and Councillor Cronnelly have spoken about this.
It is so important when a person is in a position to do so that he or she constantly fights. The witnesses seem to be fighting a battle and there must be more awareness and understanding about it. Councillor Bailey spoke about education, special needs assistants and special classrooms. We must ensure we prioritise these more. It is something I am really dedicated to. All the members of the committee will be 100% committed to working and achieving what we need to achieve for people with disabilities to ensure there is access, understanding and awareness.
I thank the witnesses for coming today. I missed some of the meeting because I was speaking in the Dáil. Many of questions I wanted to ask have been asked already.
Ms Renee Dempsey-Clifford:
I apologise. In trying to be well-behaved, I was perhaps too well-behaved. I intend to be brief. This has been a very interesting discussion and I am very conscious that the purpose of today's broad discussion concerns participation in political, cultural, community and public life. While we are talking about all the other elements, it goes to show a holistic approach is required and it is not just about one standalone issue; it is about society demonstrating the diversity that properly represents it.
I am always mystified and surprised to find that even with a constituency as large as 650,000 - and if each of those with a disability only had two people who care about them, believe me when I say there are more, we are talking about almost 2 million people either directly or indirectly affected by matters - there is still a failure in society to properly integrate people with disabilities in the normal and daily life to which they are entitled. On a personal basis I do not propose to give any examples because I would rather give the floor to people like Dr. Rath, Ms Costello and others in the group of witnesses who know what they are talking about from daily experience. If political and public life represented to a greater extent more people with disabilities, matters such as assessment of need would be sharper, more pointed and better understood by public representatives. Services would also be delivered in a better way because there would be clear and linked understanding of these issues. No matter what, until one walk's a mile in somebody's shoes, one does not know the realities. Councillor Cronnelly has made that point very appropriately. I thank the committee for its time.
I intend to speak as little as possible so that I can hear from our excellent contributors because it has been such a fascinating session. I am very mindful of what Councillor Cronnelly said about everybody having a unique and individual experience of disability. In looking at this in theory, we must also consider very specific experiences because everybody's journey is so specific. For example, a reasonable accommodation is different for each individual.
With that in mind, I want to go back to postal votes and voting in general. I know in the 2020 election there was a real question and the National Council for the Blind of Ireland was very critical of the attempt to bring Braille into the process because the information was delivered very late. To get very specific about it, the ballot did not make any sense. People were given a number and they had to check to what number corresponded with a candidate. Why could somebody not just write the name of the candidate on the ballot paper? It is something for which we have facilities.
I am also very concerned about the comments about still having to prove a disability every year. It is something we see in other areas and I am very aware of it. Is there something the committee could suggest right now to lead to people being recognised as having chronic and unchanging disabilities? Perhaps we could suggest to the Minister that the matter could be eliminated from the process.
I would like to hear from some of the speakers who have had a very specific experience. Ms Costello's description of a ramp not working is useful. If people require Irish Sign Language but want to access a public participation network, it can be difficult to get that access every day. Do Ms Costello or any of the other speakers wish to comment on that?
There is also the question of quotas. The Civil Service, including Departments, had a quota for employment of 3%, for example, and I know this has been increased to 6%. If we are using that model, the quota in the UK is 10% and we should be looking at the same number. This committee should consider the use of quotas in political and public life in more detail. These are the types of numbers we should be looking at.
Dr. Vivian Rath:
A range of questions have been put in my direction over the past half hour and, unfortunately, I will not be able to get to all of them. I thank Deputy Cairns for being the first member to attempt to answer the question I posed. Deputy Hourigan followed up, and I appreciate that. This is about what Oireachtas Members can do and it is constructive and helpful for disabled people to consider that. Another important step is to include disabled people in the process.
We can just look at the Oireachtas committee and its membership. Should we have disabled representatives sitting on Oireachtas committees? Yes, we should. Do people who sit on these committees and who represent people with disabilities identify as disabled? These are some very quick steps to take.
Deputy Cairns spoke about the pledge, which would send a signal from political parties about what they want to do. A similar pledge was made in Scotland and members might look to that as a template. We can do even better than that. A number of key steps are set out that could be taken. For example, there could be a pledge to ensure all political events will be held in an accessible and inclusive manner, perhaps using the universal design approach to meetings and gatherings. These are suggested steps. Members could ensure sign language interpreters are used in debates. There may be only five or eight steps in the pledge but this would send the signal that the process matters to the Members.
There are some parties, although I will not name them as members probably know them, that have taken some very proactive steps already. I am extremely pleased to see the Oireachtas committee is acting on the failure to enact the optional protocol. As members are probably aware, I am a member of the Irish human rights disability advisory committee, so I have a role in the monitoring of the implementation of the UNCRPD. The failure to ratify the optional protocol took the teeth out of the UNCRPD and took power away from disabled people.
We are skirting around the cost of disability, which has been mentioned a couple of times. Many years ago it was estimated to be approximately €200 per week. A candidate with a disability, like Councillor Cronnelly, or me, who was a student union vice president, knows what is involved with running for election and extra costs arising because of the disability. What can be done about this? We must start investigating the possibility of implementing a fund to support disabled candidates when they are running for election. That would be very helpful and aid in covering the extra cost of disability. There is a system around that which has been shown to be working very well. Perhaps if the committee wants to consider that, it could look to the UK, where there is a similar fund.
In terms of direct experience, the survey on the experience of disabled voters in an election in Ireland, which was carried out by Maria Ní Fhlatharta and me and is the only such survey of which I am aware, was the result of my own experience. I live in Wexford. Prior to the last general election, I made the returning officer aware that I would need an accessible polling booth. In the 2019 local election there was no such booth available to me and I had to cast my vote at an open table, visible to everyone as they came in and out, with many remarking "Hi Viv, I know who you're voting for." As that was not a pleasant experience, in 2020 I made the returning officer aware of my need. When I arrived at the polling station, there was no accessible polling booth, which is a lower polling booth that is shielded from view. It is a very simple request. Unfortunately, it was not met. In terms of options, I could vote at the table where I had voted on the last occasion, leave the polling station or cast my vote in the hallway. I cast my vote in the hallway. If some other voter, not disabled but from another background, perhaps a minority background, was told that he or she must vote in the corridor, what would our view be? Why then do we think it is acceptable for disabled people? These are the questions we need to ask. This is not about disability; it is about inequality. The Oireachtas committee comprises political representatives. This is a political topic. Nobody knows more about the politics of this than the politicians. You need to work with us to present the solutions and move this issue forward.
Senator Ruane made an interesting point in regard to widening the markers around accessibility. In terms of action, we need first to implement what is already there. We have guidelines, the UNCRPD and a clear framework for what needs to be done. We need to implement it. Second, we do need to widen the guidelines and the markers, to make them more open and to bring in the wider participation. I refer again to Wexford, my home county. The Wexford PPN disability committee report showed that there is no permanent structure in place within the PPN or the local council to channel the voice of disabled people on the ground. As everyone here will know, to engage fully in politics you must start at ground level.
I will hand over to Ms Costello who has had her own experiences with voting, which, I am sure, she would like to share. My apologies but I am unable to answer the remaining questions at this time.
Before I call Ms Costello, I would like to bring in some more speakers. I am conscious of time and the need to give everyone an opportunity to ask questions or comment. I will allow Ms Costello to comment later on all of the questions raised thus far.
I thank all of the witnesses for their contributions. It is nice to see Ms Dempsey-Clifford, Dr. Rath and Ms Costello here. I have met them before on this issue, when they educated me on it. It is great to have them before the committee and to have this meeting broadcast to the country.
My first question is for Councillor Cronnelly. I am a former councillor. I got involved in politics because I wanted to advocate for people with disabilities. It was one the main reasons I put myself forward. My platform at that time was local issues and infrastructure. As a councillor, one's focus is more on infrastructure than on policy. I was really frustrated at council level because I felt that the issue of disabilities was not being taken seriously. There was a tick-box exercise in terms of passing motions on disability awareness training, access audit training and so on, with councillors who tabled motions, as I did, being congratulated on getting motions passed not but councils were not really listening. In the witnesses' experience how can we, at this level, ensure local authorities are implementing the UNCRPD, in terms of our public realm projects, infrastructure and how people interact in our communities, at ground level, which is where we all are?
Councillor Cronnelly mentioned putting up posters on poles. One of my chief election managers is visually impaired and so there were so many things that were not right for her as we went about our canvass. The list was endless, from the wrong tactile surfaces to bad footpaths and so on. I do not have time to go into it now. We learned so much on that canvass about the inequity out there. We are all equal but there is a great deal of inequity out there. At a council level, how can I help the witnesses to push that equity onto our streets for people who have a disability? It raises the bar for everybody in society. I do not believe that any family is not affected. Where I come from, 15% of the population have some sort of disability. I would love to hear from Councillor Cronnelly on those issues and I thank all of the witnesses for their earlier responses to many of the issues I had intended to raise.
Ms Annette Costello:
I thank the Vice Chairman for this opportunity. I will be as brief as possible. On the supports for people voting, I acknowledge there are newspaper publications indicating that if a person cannot attend his or her local polling station, he or she can attend an alternative one but as with a lot of other things, the person has to be his or her own best advocate and acquire the knowledge. For example, if I want to go to my local polling station and I know it is not ideal, I then have to research all of the other polling stations within my local area to see which one suits best. It is as not simple as whether it is a building that is a single storey. It is also about parking and whether one can get up on the footpath or if a ramp will be required. While there is a facility to support people with the right to cast their votes, it is not as simple and straightforward as one would think.
A very easy solution to remedy the postal voting issue is a requirement to have a registration signed off by a GP, which I do not necessarily agree with. I also think we should be taken at face value and should not have to renew that on an annual basis. Some of the other points were addressed by the other witnesses. I do not wish to be repetitive but I would like to make the point that the vast majority of adults will acquire their disability. People like me, Councillor Cronnelly and others were able-bodied for the vast majority of our lives, but something happened and our lives changed. We had to adapt. We are still the same people with the same goals and ambitions but we have to be more creative about how we get around doing things. It is fair to say that people with disabilities have a military operation every day to get out and about. I astonish myself on a regular basis in terms of how I adapt and find solutions to things that when I was able-bodied, I did not have to give a second thought to. We take so much for granted when we are able-bodied and then something changes and our whole perspective has to change. I applaud parents who have to do so much hard work to get basic human rights for their children. It must be heartbreaking for them to have to face that constant battle. The word "battle" accurately describes what they have to do. I am new to Twitter. Every day I see parents taking to Twitter in regard to the most basic of situations. It breaks my heart. I can only imagine what it is like for them.
We touched on the costs of disability as well. In recent days we have seen the Government talk about utility bills increasing. A lot of the fuel allowances are means-tested and there are a lot of disabled people who want to work and contribute to society and they are at that stage where, as Councillor Cronnelly said, if they are working they are doing so to pay all the costs of disability, not to have the additional benefits. The price of fuel is increasing at a high rate and having the fuel allowance means-tested is harsh, especially when so many people are dependent on fuel for their heat because they are not mobile and their body temperatures are not as good as those of everybody else. We also have to charge wheelchairs, electrical equipment and breathing apparatus. Those items are essential to our lives and they cost money. It is not an option to forego charging a wheelchair in order to save some money. People have to make those difficult decisions and it is heartbreaking to be faced with that in this day and age.
I am delighted to hear that the optional protocols will be pushed forward. It was a huge missed opportunity that they were not implemented as soon as Ireland enacted the UNCRPD in 2018.
All disabled people are their best advocate. Nobody will know what we need better than us. I thank members for the opportunity to speak and for their time.
Dr. Vivian Rath:
Political parties could start actively empowering young disabled people to engage in political parties and they could support those young people from the beginning. It should be based around rights. Most political parties would have some sort of equality statement and they need to work on those equality statements to ensure there are steps and policies within them to bring disabled people right through the processes of their parties from beginning to end. Political parties also need to examine whether they provide any extra funding to support their disabled candidates in elections. If the political parties themselves started working and lobbying on this to ensure these steps were implemented, a difference would be seen straight away. For instance, they could refuse to go on leader or public debates unless the venues are accessible and available to all. Steps like that would be useful and they would encourage and promote disabled people in politics. A first step would be a pledge and commitment to support disabled people to engage in public and political life. It does not have to be rocket science; there can be very achievable steps. The framework is already there and the key is to ask disabled people. Disabled people running in the last local election who required sign language interpreters could not access them and that was appalling. That is the level we are at and that is poor. Steps also need to be implemented at local level to ensure that we can access the council governing structures.
Mr. Gabe Cronnelly:
I mentioned in my opening statement that the Immigrant Council of Ireland has an internship for migrants to get the feel of getting involved in politics. There is no reason why such an approach could not be adopted by the various parties to bring disabled people in. Unless these pilot schemes are carried out to try something out it is easier to say it did not work or that it would work if this, that and the other were done.
People make assumptions on behalf of people with disabilities. If you want to know something about disability you should ask a disabled person because he or she will tell you. That goes back to Deputy Hourigan's comments on proving disability. I am sure members have come across the situation as public representatives where a young person comes of age to be entitled to domiciliary allowance instead of children's allowance and so forth and is asked whether that person still has Down's syndrome. That is degrading and represents ignorance of the highest order. Some conditions are for life and no matter what happens in the future they will not change. The same is true of spinal injuries, acquired brain injuries and amputations. Unfortunately I had to witness that myself. A year after my leg was amputated I got a letter in the post telling me I had to go in and do a medical to prove that my leg was still missing. Who comes up with these ideas? Members will have heard of these scenarios and they will be aware of them but a clinical system that does not allow the individuals to think for themselves is being used and that is wrong. My leg is not growing back although I would love it if it did. I had to change my work habits as I had been working in the construction industry and in the blink of an eye, I had to change my outlook in life.
Ms Costello said that we have seen both sides of the spectrum of being able-bodied and being disabled. It has made me a better person because it gives me an open mind to try to understand disabilities more because I am directly affected. I see what I used to be able to do and what I can do now. To me there is nothing I cannot do but it takes me longer to do it. Again, it is a military operation that we have to plan. If you take Covid, for example, if I wanted to go to Dublin I had to prebook a train ticket and if I wanted to come back down and have a disabled companion travel with me, there was no facility in place for me to book a disabled parking spot on public transport. During the height of Covid I would have had to wait for an extra two or three hours in Dublin, where there was a high incidence rate. I would probably have caught Covid in those conditions and brought it home to my family. Capacity was reduced by 50% to allow for social distancing and so forth but there were still plenty of seats available for people with disabilities to sit in. There was no priority given to them even though their needs are more complex. I could not decide on the day that I wanted to go to Dublin at 1.30 p.m.; I would have had to book my seat. I could not do anything off the cuff but if I was an able-bodied person that facility was there.
The issue of the public realm and so forth was raised. The public realm is all well and good and I have no issues with it but people with disabilities are not consulted in public realm planning. For example, if you take someone with a visual impairment, his or her guide dog is trained to walk with the kerb and we have seen outdoor furniture being used in disabled parking spots. Tomorrow is Make Way Day and the blatant abuse of disabled parking spaces is systemic in this country. Some people do not know that the appropriate fine is €150 for parking in a disabled spot, going up to €225 after a month when the normal parking fine is €40. People justify it by saying they only wanted a spot for a minute. Ms Costello will tell you that if we have to walk down the road, we become worn out due to mobility issues by the time we should have reached our destination.
If one goes to Lidl or Aldi, the prime parking spots are right outside the door and in open view in order to make it accessible. If the people directly involved in the consequences of misuse of spaces were consulted, disabled parking would be more accessible. They look well and they have hatch box lines and so forth, however, due to the practicality of their use, many spaces are not fit for purpose. Some are not wide enough. The people concerned and most vulnerable to the abuse of these spaces are not consulted. Rights come first, as far as I am concerned, and policies come afterwards to ensure those rights are upheld. The stakeholders are the people with the disabilities themselves. They are best placed to speak for themselves. I am sorry if that was a bit of a rant. This is my own personal view on the matter and I will argue with anybody over it.
Do the members have any further questions or comments? Everybody has had an opportunity to come in. Earlier, I referred to members who had a specific question for Councillor Bailey. If they wish to ask a further question, they can indicate and I will bring them in.
I have listened intently to what has been said by everybody and it has been a worthwhile exercise. However, this exercise will only be worthwhile if we take what has been said on board. I was struck by a few points made by Councillors Bailey and Cronnelly, who are practising politicians. I have known Councillor Cronnelly since the first day he was elected to Galway County Council. He will recall that on his first day in the chamber there was a big hoo-ha because he needed to sit in a particular place due to his disability. He needed to put his leg at the edge of the seating arrangement. It took three meetings to get the arrangements right. That was an incident that will forever live in my memory. I recall at the time that Councillor Cronnelly took it on board matter-of-factly. We dealt with it and convinced people that political parties did not have a right to particular seats and that they had to accommodate everybody in the chamber. It was an incident that continues to stick in my mind since that day. Councillor Cronnelly has come a long way in advocating for people with disabilities and for others. He laid it bare before us today.
There are a number of issues that have come up which we need to address as a committee. We should continue working on putting the optional protocol put in place. We should not allow it to get lost in a fog of excuses about legislation. The other matter is the assessment of needs for young children, which I spoke about earlier. We need to press ahead to ensure if changes are made, they are effective. I note the comment Councillor Cronnelly made about his leg. He said that it will never grow back but he wishes it would. He has said that to me many times since I got to know him, in relation to how people are assessed. I know of a case of a child who is blind. Every time the parents apply for something for their child, they end up having to provide the paperwork to prove the child is still blind. This is degrading and is absolutely wrong. We need to make sure that the rights of people with disabilities are upheld. The optional protocol is important in that regard.
On the matter of representation in politics, we should take on board the internships referred to by Councillor Cronnelly. We should say that as of today we are going to advocate for this to be put in place on a pilot basis. In regard to people with disabilities who are in politics, we should do a survey to find out how many are within local authorities. Perhaps as a group, we should come together to advocate. Today we have heard some powerful words. Words are okay but we need to convert them into action in collaboration with the witnesses. We should not consider that today's work is done or that the box is ticked. We have spoken to these people and we need some action.
The right to vote is a right everybody has. There should be no ifs, ands or buts about it. The right to vote in privacy is what this is all about. I look forward to working with the witnesses. Today is the first engagement with this sector on political representation. If we do anything as a committee, we should progress and advance this issue. In the next election, be it local or national, more people with disabilities should be elected not on a token basis but on the basis that we require them within the system in order that they can be part of the legislative process dealing with the issues they face, as well as the issues everybody else faces. It is incumbent on us to ensure that happens. It is a challenge but we, as a strong committee, will do our best to make progress.
I thank the witnesses for their contributions. Today has focused us on the areas that we need to work on. I thank the Vice Chairman for her skill in ensuring everybody got a chance to say something. I will leave the meeting shortly as I have another meeting at 11.30 a.m. I am not leaving out of disrespect. It is because I need to attend another meeting. I will be in contact with witnesses again through the committee and hopefully we will meet in person next time, please God.
I have to conclude the meeting now. Some people may have thought the it was due to go on for three hours, but that is not happening just yet. The meeting has to conclude now. I thank all our witnesses for coming here and sharing their experiences today. I thank all the members who spoke so well. This was a very interesting and thought-provoking discussion. With the introduction of some very simple measures, voting could become accessible and afford equality to disabled people. All of us here are involved in politics and those of us involved in political parties should do much more to ensure the inclusion of disabled people. We need to take responsibility for that, and we do.
This meeting is now adjourned. The next private meeting of the joint committee will be held on Thursday, 30 September at 9 a.m. followed by a public meeting at 9.30 a.m. I thank the witnesses and look forward to further engagement with them.