Joint Committee on Disability Matters debate -
Monday, 8 Apr 2024

Role of Disabled Persons Organisations and Self Advocacy in Providing Equal Opportunities under the UN Convention on the Rights of Persons with Disabilities Implementation: Discussion

An Cathaoirleach

Apologies have been received from Deputy Canney.

Today the committee is meeting a range of stakeholders, disabled persons organisations and self-advocates to discuss the role of DPOs and self-advocacy to provide equal opportunities under the UN CRPD implementation. I welcome all the witnesses who are extremely welcome to Leinster House. I apologise for having to change the venue at such short notice; we were only informed late on Friday.

This is an important day for the Committee on Disability Matters. We are here to listen, and to hear the suggestions and issues the witnesses want to raise. We will have many speakers throughout the day. Today we will have one member responding to each question. It will be really about the evidence that the self-advocates and DPOs will be giving rather than the committee.

I thank all the members of the committee for making themselves available on a Monday, which is difficult with the schedules and everything else. I appreciate very much that they are here in such numbers early on a Monday morning. Our team worked right throughout the weekend, in terms of reorganising, up to almost 12 o'clock on Saturday night and all day yesterday. I thank them sincerely for facilitating this meeting. It was a huge amount of work that we did. All of those who have made themselves available today are most welcome to the meeting.

I will read out the note on privilege. All witnesses are reminded of the long-standing parliamentary practice that they should not comment on, criticise or make charges against a person or entity by name or in such a way as to make him, her or it identifiable or otherwise engage in speech that would be regarded as damaging to the good name of a person or entity. Therefore, if their statements are potentially defamatory in nature in respect of an identifiable person or entity and they are directed to discontinue their remarks, it is imperative that they do so. Of course, the members are reminded of the selfsame parliamentary privilege and practice.

On behalf of the committee, I will welcome each of the groups individually. When we change over to the next group, we will welcome them as well, if that is okay with everybody. In the first session, we have: Ms Gillian Kearns and Cír Doyle from Neuro Pride Ireland; Ms Jacqui Browne and Ms Lianne Quigley from the DPO Network; Dr. Robert Sinnott and Ms Mena Fitzpatrick from Voice of Vision Impairment; and Dr. James Casey and Mr. Peter Kearns from Independent Living Movement Ireland. They are all very welcome.

I will start by asking Cír Doyle to make the opening remarks.

Cír Doyle

Gillian will actually-----

An Cathaoirleach

Ms Kearns will make the opening remarks.

Ms Gillian Kearns

I thank the Cathaoirleach, the Leas-Chathaoirleach and esteemed members of the committee for their invitation to this committee session today. Neuro Pride Ireland is Ireland's only national cross-neurodivergency disabled persons' organisation, and we represent neurodivergent people from, or living on, the island of Ireland. We were founded as a cross-neurodivergency organisation in response to community need as the majority of neurodivergent people have more than one neurodivergent identity; for example, up to 80% of autistic people also have ADHD. As well as holding peer support and social groups for our approximately 1,000 members and an annual festival of social and cultural events, we produce educational materials and actively advocate for neurodivergent people's right to full participation in all aspects of society. Neuro Pride Ireland is a disabled persons' organisation as all members of the founding committee and organising committee and additional volunteers are neurodivergent, with most of us also having other physical impairments. As such, we appreciate the committee's invitation to participate in this discussion today.

Neuro Pride Ireland firmly believes in the disabled community maxim "Nothing about us without us". It also believes that the voices of those with lived experiences should be prioritised over those of service providers, charities and caregivers. Thankfully, this belief is also outlined within the UNCRPD. We recognise that the role of DPOs and self-advocates is to champion the views and lived experiences of disabled people in order to inform policy and legislation which directly impacts disabled lives. We also recognise, however, the State's role to ensure disabled voices are heard throughout all decision stages that will impact disabled lives. To fail to do so is to fail to meet obligations under the cross-cutting Articles 4.3 and 33.3 of the convention and a failure to meet general comment 7, which directly explores this principle.

It is not enough to provide us a space to share our thoughts; the State must ensure that the process is accessible to DPOs. This covers so much more than we could begin to touch on in five minutes so we will focus only on capacity building. To be able to fully engage in the ideal level of consultations, we believe the State first has to recognise that many DPOs are grassroots organisations relying on the unpaid labour of disabled volunteers. As such, the needs of each DPO will vary depending on the skills and availability of its team. For meaningful participation, the State must help in the capacity building of DPOs and remain flexible in its approach to this. For example, capacity building for some DPOs may include computer literacy education but this is not a need for others. Like most things in the world of accessibility, we cannot approach this with a one-size-fits-all approach but instead must be flexible and responsive to the needs of DPOs.

I will pass over to Cír to do the rest of the introduction.

Cír Doyle

When considering this capacity-building, we must also make allowances for DPOs as they develop their knowledge of the processes we are asked to engage with. For example, writing submissions can be intimidating. I was lucky to receive informal peer support from the amazing volunteers in Disabled Women Ireland when I wrote my first submission. However, we cannot allow rigid bureaucracy standards to be a barrier to emerging or smaller DPOs from engaging with the State.

When discussing capacity-building it is imperative to mention that a disabled person's ability to engage voluntarily should not be held against them when considering payments such as disability allowance. Most DPOs, if not all, are understanding of fluctuating capacities in a way that is not currently understood by the greater society. Take me for instance - I am here today, but that is due to the support of my family and the team in Neuro Pride Ireland. These occasional engagements are not indicative of my or any other disabled person's ability to engage in full-time or even part-time employment. If this DPO engagement endangers a disabled person's income, that in itself is a barrier.

While I am conscious time is nearly up, I implore the committee to also consider the need for safe spaces to allow for intersectional consultations for multiply-marginalised disabled people and the need for a registration of DPOs vetted with minimum bureaucracy requirements so as not to be a barrier for neurodivergent people or those with intellectual disabilities. We should not have to be a registered charity or CLG to be able to engage as a DPO. The need to compensate us for our labour is also important, including, for example, travel allowance and childcare. We are carers and we also work. We cannot afford to take time off for multiple consultations. There is the need for accessible information and meetings, whether that is information about the air quality, masks or guidelines on what to expect. The more informed we are the better. It allows us to make informed decisions. We need to keep the door open for smaller, emergent DPOs to join the conversation.

I encourage all members to reflect on the amazing work that has already been done in this area, especially UNCRPD general comment 7 and the DPO Network Position Paper 1. Once again, we thank committee members for this opportunity. We look forward to engaging with them on this topic today and in the future.

An Cathaoirleach

Thank you very much. I call on Ms Browne, who is online, to make her contribution.

Ms Jacqui Browne

I thank the Chairperson very much. It is great to see so many Deputies and Senators here. The DPO Network welcomes the opportunity to be here. I am the chair of the network and I am joined by my colleague, Ms Lianne Quigley, who is attending in person.

The DPO Network is an alliance of five national disabled persons' organisations in Ireland. They are AsIAm, the national autism advocacy organisation, Disabled Women Ireland, the Independent Living Movement Ireland - members of which are also presenting today - and the Irish Deaf Society. I am joined, as I said, by Ms Quigley who is a representative from there and the DPO Network and the National Platform of Self Advocates. The DPO Network relies on disabled people’s collective lived experience, expertise and analysis to inform our work. We are led and informed by the active input and participation of disabled people in accordance with the UNCRPD and that facilitates cross-impairment analysis of the issues we face as disabled people.

We have been asked to particularly address the question around how DPO Development can be more inclusive to achieve our human rights and meaningful participation for disabled people across all groups, including those with complex impairments. In answering this question, we wish to focus on the words "inclusive" and "meaningful participation", or as we prefer to say, meaningful engagement. What do these terms mean? What do they mean in practice and is there a gap happening? From our perspective, too often only lip service is being paid to participation.

Often this amounts to little more than tokenism and a box-ticking exercise by agencies. We need to change. Change is needed now and, to be fair, we can see this change is beginning to happen in some spaces. We have had very successful engagements and we have worked very well with the Oireachtas Joint Committee on Disability Matters. We also have very close engagement and work very successfully with the Department of Children, Equality, Disability, Integration and Youth. We are currently working closely with the Department to co-create the new national disability strategy, which is to be launched later this year.

What we are asking for is that all State Departments, bodies and related services focus on changing their own attitudes, processes and workflows to include universal design, meaningful engagement and co-creation of plans, strategies and policies. This must include DPO participation in the monitoring and evaluation of such strategies and plans. Disabled people must be deeply involved in the implementation of the CRPD in Ireland.

We have a central role to play in the State's implementation of the CRPD in order to advance equality, inclusion and the human rights of disabled people everywhere. We invite members to visit our website to review our recent publication, The Role of Disabled Persons' Organisations (DPOs) in Ireland. It is available at www.dponetwork.ie.

Although DPOs have been established in various ways for many years, it is only recently that the State is starting to recognise and understand its responsibility to place us at the centre of policy development and implementation. Currently, many DPOs are not adequately resourced or even resourced at all. We are led by volunteers. We need State support in order to participate in an appropriate way. DPOs need multi-annual funding in order that we can ensure the collective voice of disabled people informs policy development and also to monitor the implementation of the CRPD in Ireland at local and national levels.

To achieve meaningful engagement we have a number of key recommendations, all of which are set out in our DPO network position paper. These are described in more detail in that paper but I will share six of the key positions with the committee. First, we need the establishment of a national register of DPOs, as referred to by Neuro Pride Ireland just before me. We also need an effort to be made on the design and implementation of a framework for co-creation - how we work together to create strategies and frameworks.

There is a need for the recognition of the role of DPOs as the authoritative representative voice of disabled people. While the DPO Network acknowledges that there is a role for disability service providers in the provision of services, they have no mandate whatsoever to speak on behalf of disabled people.

There is also a requirement that systems for structured engagement and consultation entail representation from recognised DPOs and not just individuals. An example of good practice in this area is the national civic forum which has been in operation for a number of years.

As has been referenced before, we also need the provision of adequate, multi-annual core funding to DPOs so that we can effectively engage in policy development, implementation and monitoring of the CRPD. The provision of support to DPOs to develop technical and organisational capacity is essential. This cannot happen on fresh air or just with volunteers.

On behalf of the DPO Network I thank members for their time and interest in this important topic. I look forward to engaging with the committee in the future to ensure ongoing, meaningful engagement with DPOs. We congratulate the committee on hosting today's meeting and wish it all the very best with the event.

An Cathaoirleach

I thank Ms Browne very much. I now call on Dr. Sinnott of Voice of Vision Impairment, VVI, to make his opening statement.

Dr. Robert Sinnott

I am joined by my colleague, Mena Fitzpatrick, and also by Siobhan Roche from VVI as well, who is in the Gallery.

I will get through as much as possible in five minutes, knowing I still cannot read the notes in front of me. The last two times I have been here, I have mentioned that we are not resourced enough for me to have the technology to perform at meetings in an equal way, but here we go anyway.

We use the words "disabled persons representative organisation" to also mean "disabled persons organisation" for practical reasons. DPO can be confused with data protection officer, designated public official, etc. Also it is in keeping with Article 4.3 of the UNCRPD, which refers to consulting disabled people "through their representative organisations". The legal opinion we commissioned in 2021 showed the only representative organisations, as Ms Browne said, are DPROs. There is nobody else. The UN committee is happy with different uses of language: organisation of people with disabilities, medical model sort of language, DPOs in Britain and other things, but we work with DPRO, as do our colleagues in Physical Impairment Ireland.

Collective representation is like collective bargaining in terms of trade unions. Collective representation is vital to continuity and consistency. It is a cross-cutting cornerstone of immediate effect in the CRPD. We know it is of immediate effect from general comment No. 1, paragraph 30. It is not of progressive realisation, as the State has been wrongly claiming all this time, which applies to social, economic and cultural issues but not to our political rights. It is often forgotten that DPROs are strongly mentioned in Article 29.b.ii., which says the State effectively has to create conditions whereby it is worth people joining DPROs. There has to be something in it for them. That will not happen as long as we are being marginalised and ignored.

There is, unfortunately, a muddying of the waters in terms of self-advocacy by non-DPROs in their three-year strategies, etc., setting up advocacy networks and self-advocacy groups and all the rest of it. General comment No. 7 of the UN committee speaks of self-advocacy as primarily relating to those with intellectual disabilities and similar cognitive impairments, children's organisations, etc. Self-advocacy is a significant role. Those organisations of self-advocacy are DPROs in their own right. The National Platform of Self-Advocates is a 12C organisation but we do not appear to have any 12D organisation, which is for people who are non-verbal, etc., and need stronger parental or family member support. We need a 12D. That is what the CRPD means by self-advocacy.

Self-advocacy in terms of individual rights and reasonable accommodation is a different matter. General comment No. 6 refers to Article 5, concerning discrimination. People are the best experts at representing themselves and their own reasonable accommodation but in macro policy it is chaos if there is a free-for-all in terms of consultation. It is disempowering because there is no longer an iterative or discursive engagement. It ends up that he who shouts loudest gets the most. Disability and accessibility is the most appropriate realm for "he who shouts loudest gets the most". We need to move to a rights-based approach.

Since the referendums, there has been a tilt at NGOs but there is a legally binding roadmap in terms of DPROs in general comment No. 7. We need registration, as has been said, in line with general comment No. 7. We need legislation in order to disability-proof everything. For instance, the Charities (Amendment) Bill is going through. There has been consultation with The Wheel and other eminent organisations but none on the CRPD. That will mean human rights will have to go under charity, which is against the CRPD model, which is the social model of disability. That is one example. The Planning and Development Bill is another.

We also need to be protected in legislation against non-DPROs because traditionally they have claimed to be the representative organisations. There also needs to be awareness raising on that legacy.

In the meantime, the Department of Children, Equality, Disability, Integration and Youth needs to issue a memorandum. The Department will not even take phone calls and says it is not public facing. This committee has presided over this. Eight of its 14 members are members of the governing parties which have presided over that. There needs to be some responsibility for that and for the funding of the Disability Participation and Consultation Network, DPCN, to the tune of €700,000 in the last three years. There is no accountability for the fact that, according to the NDA evaluation, the network was not founded along the CRPD lines.

The memo by the Department should inform all 600 public bodies of their obligations to prioritise the views and opinions of DPROs in all disability proofing and also to stop any subversion through subsidy of research and all aspects of disability service providers. They are doing the consultative work that we are doing. That is our role to do.

Human rights means prioritising the perspectives of those with the least resources and supports. If DPROs are being ignored, it will be hard to attract members to them, let alone to have sustained involvement and engagement. Things are as bad as they could be after six years. Our experience has been that the State still has not woken up. There are some odd examples, but we have to firefight and explain all over again what a DPRO is. That is the State's responsibility under Article 8 of the CRPD. That has to change. This committee probably does not have long to go before the next election. We want a massive change from what has one before.

Ms Fitzpatrick would like to say a few words.

Ms Mena Fitzpatrick

I thank the committee for the opportunity to speak today.

Much of our work, as Dr. Sinnott says, involves firefighting for our members on different issues that come up on a daily basis, whether it is making sure that people with guide dogs have proper access to services or, to use a local example that arose only last week, the National Transport Authority bringing out a document about transport which features the idea of having trains stop in Wicklow and passengers change over to another train. That is a massive change for anyone with a disability, including me, a blind person from County Wexford.

Our organisation tries to work on different committees to firefight for our members and we do so free of charge. By coming together and, as Dr. Sinnott says, through the collective working together, I have learned a lot from being in a DPRO. The more people join the DPROs and the more the State recognises the importance of DPROs under the CRPD, the better it will get. However, it is up to the committee, Senators and TDs, to listen to what we are saying today and the messages we are trying to get across and try to make sure the UNCRPD is used correctly and that we work together to try to make things better for all the individual groups involved.

An Cathaoirleach

I thank Dr. Sinnott and Ms Fitzpatrick for their contributions. I call Dr. James Casey of Independent Living Movement Ireland to make his statement.

Dr. James Casey

I thank the Cathaoirleach, committee members and the staff of the Oireachtas. They have been very accommodating and we appreciate that. The committee's work will make a difference eventually. Politics can go up and down. We appreciate that work.

I am accompanied by my colleague, Peter Kearns. ILMI is a disabled person's organisation not only in terms of the CRPD but also in terms of social justice and historical movements. We were established in 1992 by disabled people for disabled people and we continue this legacy by harnessing the collective lived experience of disabled people in Ireland and facilitating objective authentic agency to their perspectives.

Independent living is an aspiration of every person, disabled or non-disabled. It is not, perhaps, so much living on your own as living a life of self-determination, whatever form that takes. However, it is not a segregated life, whatever guise that is presented in. It is living and thriving and contributing to our communities. Nonetheless, to reach these goals we must co-create, collaborate and monitor the policies, rights and strategies that enable us to achieve them. This can be achieved only with disabled people and their organisations.

DPOs are crucial conduits of the collective authentic disabled person’s perspective. Without authentic DPOs, we cannot move from single issue-based policy targets to more strategic and nuanced policy objectives. DPOs give policymakers structure of consultation but, more important, they also give policymakers access to authentic, citizen-generated data and, critically, the opportunity to move from consultation to co-creation of policy. This makes for better policy, which makes for better outcomes of opportunity for those it affects, which leads to a more healthy and inclusive society. DPOs allow for strategic thinking and for accountable representatives to bring agreed actions and targets.

Although individual disabled people can and do bring their own issues to local or national structures via self-advocacy, they cannot bring an authentic cross-impairment, collectively mandated, intersectional analysis to develop or inform policies. There are numerous examples of policymaking spaces where the State recognises the primacy of collective autonomous spaces for people who experience social exclusion.

Disabled people need to be resourced to participate in, recognise and celebrate the value of collective empowerment in DPOs. Conversely, self-advocacy and advocacy groups cannot be managed or facilitated by service providers or their representative organisations. This is very important. There is incompatibility due to power dynamics. It is not impartial, it is not in the ethos of the CRPD, and it is against the basic tenets of our democratic and social contracts. A structured, objective conduit of agency, such as a DPO like ILMI, enables disabled people to articulate their perspectives and lived experience of issues in a strategic fashion, without a conflict of interest or a fear of reprisal.

The CRPD is clear on the prominent position of DPOs in advocating for disabled people, and this is rather detailed in the articles, of which Dr. Sinnott mentioned a few. What is less clear is the misrepresentation of who is speaking for the collective wishes and experiences of disabled people. In the absence of mandated DPOs, many organisations and individuals have claimed to speak on behalf of disabled people, contrary to the aims of the CRPD. This is perturbing and undemocratic and puts the social contract under yet more strain. The co-operative strategic input of mandated DPOs has to be recognised as a matter of how to realise the CRPD and build the participative democratic inclusion of disabled people in the design and monitoring of policies and practices to realise our rights. Allies are welcome and appreciated but they cannot speak for disabled people, nor can they claim the mandate to do so. This puts our democratic and representational processes under question yet again.

ILMI has a demonstrated track record and values-driven collective ethos to be best placed, with its fellow DPOs, to facilitate and co-create meaningful polices and strategies. Our project ONSIDE, on which Mr. Kearns and I worked in the Border counties, and the Strategies for Change initiative were unique, transformative and successful and led by disabled professionals. We believe that they, with the rest of our efforts, have contributed to shifting the paradigm of disability in Ireland to a more modern, human rights and equality perspective. As a DPO, ILMI has endeavoured continually to make disabled people part of the conversation about diversity and true inclusion in society and recognise active allyship with other marginalised and equality-based organisations and groups. We have always done this diligently, with the collective good driving our efforts. However, we are under-resourced, undervalued and underrepresented. When we consider the disability industry and sector in Ireland are funded in the order of many billions of euro of public money, we see how truly small our financial support is but how big our impact has been. We need support - long-term, multi-annual financial support and other forms. We have shown ourselves to be a catalyst for change and an authentic voice for disabled people, and we have added to the discourse on social justice and environmental concerns. We have always tried to bring people together rather than part them, and we have always done this with our values at the core of our work.

ILMI recognises, supports and values the intersectionality of disabled people and the multiple forms of discrimination we may face. We share and promote common goals with social and climate justice groups, women’s rights groups, LGBTIQA+ rights organisations, Traveller rights and solidarity groups, anti-racism groups and people of colour groups. We do this because it is the right thing to do and we do so not by division or othering but by active solidarity and collective agency with solution-based policies based on the collective voice. This is how we can achieve a more inclusive, fairer and more balanced society. We have always had more in common than we ever will have apart.

An Cathaoirleach

I thank all the witnesses for their contributions. I ask the Vice Chair, Deputy Tully, to comment on the contributions to date and ask the first questions.

Deputy Pauline Tully

I thank the witnesses for giving up their time. They are very generous with their time. It is not the first time most of them have appeared before the committee and shared with us their expertise on disability. They are the experts on disability and all issues relating to disability. This is a day for listening so we are here to listen and learn. While we have heard many of the issues raised by the witnesses before, it is important we hear them again and again and that they are reinforced. Many of the witnesses raised common issues. They made the point that there needs to be engagement between disabled people's organisations, DPOs, or disabled people's representative organisations, DPROs, and all public bodies, Departments and Government agencies from the outset. It should not happen halfway through a project and should not be, as Ms Browne called it, a box-ticking exercise or afterthought. It needs to happen from the start and that cannot happen until a proper register of DPOs is drawn up. Several of the witnesses raised that point and it is important.

The Minister of State, Deputy Rabbitte, and one of her officials gave a commitment to do that, although they initially said it would not happen. They did so in the audiovisual room a few months ago when a number of the witnesses were present. Work will be involved in doing it. Even the drawing up and compiling of the register needs to be done by engaging with DPOs and in accordance with the UNCRPD. Both of those are important. When the register has been drawn up - quickly but properly - it will be vital because it will signpost and make clear to all Government agencies, public bodies and so on who they need to engage with on every policy going forward. No one will be able to say he, she or they did not know who to engage with or that they thought the other organisation was the right one to engage with. That is important and this committee needs to follow up on it. We give a commitment that we will find out where it is at and how soon it can be done.

The witnesses all outlined the fact that many DPOs are made up of volunteers who give of their time freely and sometimes it costs them money because they have to take time off work or pay for the different supports they need to be able to engage. Those are all things that also need to be addressed. DPOs need to be properly financed and supported so that the people who are members of DPOs can participate and engage with committees like this or public bodies. It also needs to be done at a time that suits. I have heard disabled people say many times that they were the only unpaid person in the room. All the other officials were there as part of their work and therefore being paid, but no consideration was given to the people who had to take time off work, give up their time or organise childcare. All the barriers that exist to getting there and participating were not even considered and those people were the experts in the room. All those things need to be recognised and addressed and the register will be important in doing that.

Another important point that was made is that if payment for participation is arranged, as it should be, it should not affect disability allowance or the blind pension. There are ways of addressing that.

It is being done in other jurisdictions and it needs to be done here as well. Again, it should be done in consultation with other people in order that it is done in a proper way and is not seen as a charity or whatever.

I thank the witnesses for their time and engagement and for everything they have put forward. It has been very important. I have enjoyed listening to all their contributions here this morning. They have made very important points which we will take on board and pursue. We will continue to engage with them on a regular basis.

An Cathaoirleach

I thank Deputy Tully and I thank all of our guests for their contribution to the question. Deputy Tully also touched briefly on the point that there is this constant attitude about charity. It is human rights, human dignity and each person having his or her rights on an equal footing. It is very important that the rights basis is moved away from this attitude to charity within society, which I believe was alluded to, not just here but throughout the world. I thank our guests sincerely for their contribution. I ask them to keep engaging with us as a committee because we are as strong as the information they constantly give us, together with the criticism or otherwise which we deserve, because we are here and are committed to improving society for everybody, particularly for people with disabilities. I thank them for their participation.

We will now suspend the committee's proceedings for a few minutes to allow our second question to be asked.

Sitting suspended at 11.46 a.m. and resumed at 11.54 a.m.

An Cathaoirleach

We have Justyna Maslanka and Neil Moore Ryan of Mental Health Reform’s grassroots group. We also have Annette Costello, Donna Baker, Donal O’Shea, Gary Kearney, Eileen Battersby and Paul Alford. They are the groups. The question we have today is how they have been supported to advocate or self-advocate to support their human rights. I ask Annette Costello to make the opening remarks.

Ms Annette Costello

I thank the Chair and committee members for the invitation to speak today. I am a self advocate with lived experience. I was diagnosed with a progressive non-treatable neurological condition in 2006. With regard to the question asked in my invitation as to how my human rights have been supported, I say in summary that there is a lot more work to be done in terms of compliance with the UNCRPD, which is also evidenced in the publication of the committee’s report in January 2024. There will be a session on independent living later today, so in the interests of time I highlight that home care packages should become more person centred, with flexibility, and personal assistant services should become an automatic entitlement and provided for in primary legislation before the end of the current Dáil session.

With regard to transport, a frequent and reliable public transport service with accurate information is imperative. There is also a huge problem with wheelchair accessible taxis, and even though there may be increased numbers, the day-to-day user experience of receiving a reliable and suitable wheelchair accessible taxi is far from ideal. I have raised all of these issues with the Department of Transport accessible consultative committee since 2018. I recommend a complete review of transport services to have one that is fit for purpose for all members of society.

I will turn to infrastructure. Shared spaces, dangerous footpaths, poor dishing, kissing gates, lack of wheelchair accessible parking spaces and disabled parking bays that have no dishing to safely get on to the footpath and lifts out of order have been detailed on other occasions. Poorly designed footpaths and dishing also impact my ability to be independent in my community. If it is poor for me, it is also poor for families with buggies and older people. Infrastructure issues also lead to difficulties when trying to vote.

Leaving one’s home, many buildings, shops, social settings and ATMs are not designed for wheelchair users and this lack of universal design can cause us to be excluded and marginalised by society, even if it is unintentional. The simplest excursions outside of the home require planning like a military operation and there is no room for spontaneity. I recommend that universal design become mandatory especially for any building or social setting.

There are many issues with regard to health. However, I will highlight two that I have recently experienced. It is not possible to get a hoist transfer from a wheelchair to a DEXA scan machine. This is after contacting 13 different radiology centres - a mixture of public and private. Another challenging experience is trying to get a dental appointment where I can remain in my chair. I recommend that all procurement processes include a mandatory requirement that the equipment and environment are suitable for all. I also recommend that all healthcare facilities follow universal design and have at least one changing places bathroom in each location.

It is without doubt more expensive to be disabled than able-bodied. The long-term illness card does not cover all medications a disabled person might need. Being immobile also results in significant heating costs as it is difficult to stay warm in standard heating settings. Electricity costs also increase because of charging wheelchairs, electric beds, hoists, breathing apparatus, etc. The recent deposit return scheme will also add to my cost of living as I do my shopping online and cannot return the empty bottles easily. I recommend that all disabled people automatically receive a medical card, free public transport and a cost of disability payment as outlined in the Indecon cost of disability report published in December 2021.

Employers need to create an inclusive environment where all staff are given opportunities to reach their full potential. Disabled people are innovative, solutions orientated and offer a unique perspective, which is an asset often overlooked. We are not a problem to be solved. Diversity and inclusion is more than words; it is the day-to-day environment, language and culture. Policies and procedures are meaningless unless they translate into jobs and roles where disabled people are valued, encouraged and have career progression. I recommend that all employers action their words with regard to diversity and inclusion.

Law and order is another hot topic. An increased Garda presence is required on our streets as I personally do not feel safe. Parking on footpaths and across dishing is widely abused and the existing road traffic regulations must be enforced.

A disabled family member affects the whole family, not just the individual. The role of family needs to be valued more by Government, employers and society. Many disabled people can feel that everything revolves around them, which is not the way it should be. It is vital that the UNCRPD be implemented in an expeditious manner. All Government officials and public servants must work together with a sense of urgency. Lack of resources, human or financial, can no longer be cited as a reason for non-progress, particularly as we have seen how the Government can respond in other situations. Disability-related matters are at crisis point and have been for a long time. Missed deadlines and ticking the box without considering whether something is fit for purpose can no longer be acceptable and people must be held to account. Ireland is regarded as a wealthy country, but, sadly, there is little evidence of this if you are disabled, which is a shocking reflection of our country in 2024.

As a disabled person, I have become more resilient, highly organised and solutions focused, while trying to remain positive in a world that would exclude me if it could. Having to highlight shortcomings is also wearying, exhausting and demoralising, particularly when the typical response is "Send in a complaint". I do not want to be sending in complaints. I just want to highlight issues I feel are safety issues. Sometimes I feel as if I am regarded as a serial complainer when I am just am just trying to improve things. No decisions should be made for me or any disabled person without our input, especially at the start of any process.

I hope that the contributions presented today will further advance progress in improving the improving the lives of disabled people as prescribed by the UNCRPD. I again thank the committee for the invitation to attend and I look forward to further discussions later on.

An Cathaoirleach

I call on Ms Baker to make her opening statement.

Ms Donna Baker

I thank the Cathaoirleach and members of the committee for this invitation. This opening statement is with reference to the question "How have your human rights been supported?" Ireland has clearly demonstrated its responsibility on an international level by signing up to the UNCRPD, a human rights treaty for people with disabilities. Although this is ultimately progress, it is still not enough.

I am a self-advocate but am also a member of a support group called Amputee Ireland and Beyond. I have a limb impairment - lower right arm - so I am talking about my own experience, but also I will refer to the experiences of eight participants interviewed for my Master’s degree thesis entitled "The impact of Irish national and international Health policies [including the UNCRPD] and services on the quality of life of amputees and those with limb impairments in Ireland". I feel that having a disability and being a disabled researcher adds value and experience to my research. Being disabled is special. We get to see a very different side to humanity. This should be valued as insightful and beneficial.

Traditionally, disability was not regarded as a human rights issue. It was seen as a medical issue requiring medical solutions and for support through welfare and charity for those who cannot be cured or corrected. It is hoped that this is no longer the approach we have towards disability and that, at last, modern legislation will hopefully take us away from historical harms and discrimination.

I no longer wear a prosthetic but I have done so in the past. Most of my life has been spent in the UK. Access to prosthetic healthcare in the UK was through the NHS, which was of a high standard in my experience. Accessing prosthetics for anything - any sport, and any hobby - was easy. They would happily make a prosthetic if it meant you could enjoy life more. I was not aware of the difficulty in accessing services and prosthetics in Ireland with all of the processes and necessary approval from resource management boards, especially for leisure activities. I applied for a prosthetic for violin playing but was not successful based on a policy which refers to "prosthesis for everyday mobility use only". If it is not for daily use, it is not seen as worthwhile. Leisure activities are not seen as necessary unless you fund the prosthetic yourself.

The WHO might disagree because it has asserted that assistive technology is more of a right and stated:

Assistive technology is also a means by which to exercise human rights. The UN Convention on the Rights of Persons with Disabilities recognizes this [in Articles 2 and 20]. It requires states to provide necessary assistive technology to enable people with disabilities to exercise their rights to education, work, leisure, participation in the cultural life of the community etc., and freedoms of opinion and expression.

This quote came from the Global Report on Assistive Technology. This report has ten great recommendations to improve assistive technology systems, encourages universal health coverage and would aid in supporting the UNCRPD.

My masters focused specifically on the health service and the importance of support and assistance, including the need for the assistive technology required by many amputees and those with limb impairments. The Irish Human Rights and Equality Commission points out that "While discrimination reported by people without disabilities is most likely to occur in the labour market, discrimination reported by people with disabilities is most likely to be in accessing health services" and the discrimination they experience is likely to have had "serious or very serious effects on them compared to those with no disability".

The impact of not being able to access services quickly and efficiently is massively impacting amputees and those with limb impairments. It is not the case that everything is terrible or awful. Some of the participants I interviewed had good experiences. However, there is no one standard, "no national standards that apply to the provision of services to people who have had amputations" and no national statistics are compiled, as recommended by the UNCRPD, something which would aid improvements.

Many discussions were had about the endless bureaucracy experienced within the various Departments and health services when trying to access treatment abroad schemes, primary health certificates, prosthetics and aids and even when trying to get blue badges for arm amputees. In referring to the HSE, one participant said "I mean it's like, you know, the HSE take your independence and your freedom and put it in a box and throw away the key". Another referred to the lack of support, saying:

There is no one, what’s the word I’m looking for, there is no one to contact. If I have a problem with something. There's no one there, like a shoulder to cry on or [...] a favourite voice or something [There is just] nowhere to go

On applying for prosthetics through a resource allocation board and waiting long periods while experiencing blisters and pain, one participant said "The HSE for four months has refused because in their opinion I have a leg that is semi-functional, why does it need to be changed." There are quite a few references to a wall of silence, feeling like a second thought and the use of the word "backwards" with regard to the HSE, feelings of isolation and a lack of independence when it comes to accessing services or getting services that actually benefit the patient holistically, that is, services that do not merely tick boxes.

I am unsure whether I have answered the committee's question fully. I would like to suggest that this service has the potential to be excellent if the system was more centralised. What if you could register your disability, especially when the disability is physical, for example, an amputation, and then use the registration to access all the other Departments and schemes, such as the blue badge and medical card, easily?

I understand there is a great list of goals under the National Disability Inclusion Strategy 2017-2021. The strategy states: "We will work together to ensure joined up public services for persons with disabilities." This goal will be of great assistance in further supporting human rights and access to good public services in Ireland. The sociologist Max Weber warned of "the possibilities of bureaucracies becoming an ‘iron cage’ in which individuals find their freedom of action constrained and their activities over-regulated by rigid procedure". This can only delay the potential of the UNCRPD. I thank the committee for listening.

An Cathaoirleach

I thank Ms Baker. That was greatly appreciated.

Mr. Donal O'Shea

Ar dtús, is mian liom mo bhuíochas a ghabháil leis an gCathaoirleach, na Teachtaí Dála agus na Seanadóirí as a bheith anseo inniu. I thank the committee for the opportunity to address it today on the UN convention. With lived experience of a debilitating rheumatic condition, ankylosing spondylitis, I have had significant input in a personal capacity through the public participation network as well as the civic forum and various European entities, all of which is in keeping with the UNCRPD. I received a global award for social impact at the UNESCO HQ in Paris last month, as well as other accolades at both national and county level.

I wish to outline how my human rights have been supported. Areas such as travel, some housing supports in addition to a number of avenues through which to channel one's advocacy are welcomed. However, the fact one has had to go outside of the State on three separate occasions to reinforce primary human rights speaks volumes about our values and the associated impacts on citizens. In addition to lived experiences, the need for these was reaffirmed following feedback after media participation. These include, first, representation to the European Commission and Parliament, which was made in March 2021, a year after representation for Government formation, to reinforce the civil rights of the disability sector. This was confirmed in a letter by the European Commission Secretariat-General division on citizens, equality, democracy and rule of law on 30 April 2021. I have enclosed this for the committee. As outlined in the letter by the Commission, “It aims to enforce the civil rights of the several millions of persons with disabilities in Europe and abroad.”

Second, representation was made to the office of the director of the World Health Organization to ensure policy is adequately aligned, robust and holistic in nature. This focused on social inclusion, the disability sector, mental well-being and childhood alienation. On returning from a TASC meeting at Buswells Hotel on 7 October 2021 in which seven European countries were represented, it was confirmed by an authentic source that members of the Judiciary were due to get training on mental health the following day.

Third, representation made to Sara Minkara, who is the United States special adviser on international disability rights, led to media coverage on behalf of Government confirming that “disability rights are human rights” two months later in September 2023.

I wish to focus a number of areas. First is healthcare, including mental health. Revelations by RTÉ's health correspondent in March 2022 showed that last year, hospital mistake claims rose above 105,000, "including almost 50,000 relating to clinical care". By any standard, these figures are exorbitant. Timelines for high-end medication need to be reviewed. Having to wait close to a decade after such is authorised by the European Commission is not acceptable. There has not been the required urgency with the chronic disease management programme, as only four conditions were listed by last summer. There are clear variations between the approach of public and private practitioners in the area of mental healthcare, with private practice adopting a much more holistic approach. Much of this culture was dealt with by the advisory team to the State in 2006, during the formation of seechange.ie with an emphasis on emotional well-being. However, some of the primary institutions of the State have not adhered to such advice, respected medical verification, or shown the required regard for how people may be impacted on numerous fronts, including those with chronic pain.

Second is social inclusion. There needs to be a significant transformation here on multiple fronts. There has not been the appropriate alignment between the State, local authorities and related stakeholders to activate funding with the appropriate transparency through the likes of the Wheel and LEADER funding. There needs to be significant incentivisation of sectors to facilitate the activation of funding as securing a lead entity is a prerequisite.

Third is legal and court services. Civic society led on the appointment of a Supreme Court judge by the Minister for Justice to review the civil legal services in May 2022, as there were clear variations between public and private practice. These are recurring themes that have undermined human rights. Provisions have now been made for vulnerability and for domestic cases to be concluded within 30 months. Forty-three NGOs have previously called for this through FLAC.

This also frees up significant time through the courts.

Civic society also led on the reform of the criminal justice strategy. The focus centred on social inclusion, equality and minority groups. The Minister for Justice announced radical reforms to family law six weeks later, on 30 September 2020.

In conclusion, there have been very clear failings with a culture which is too frequently dysfunctional and has shown little regard for the impact of disability. In undermining the disability sector, the State has undermined our democracy. In doing so, it has desecrated the memories of those who paid the ultimate price during the formation of our State and the principles upon which it was founded.

Serious consideration must now be given to having an international delegation go through each of these areas to ensure they are adequately robust and authentic in nature to respect and advance human rights.

An Cathaoirleach

I thank Mr. O'Shea. Ms Maslanka is next and then I will hand over to Ms Neil Moore Ryan from her group who is joining the meeting online.

Ms Justyna Maslanka

I am a member of the grassroots forum of Mental Health Reform. I am also a Decision Support Service champion for the Assisted Decision-Making Act. I thank the committee for the opportunity to speak today.

I am a migrant woman with mental health difficulties. Today is important because we want to make sure that people with psychosocial disabilities and invisible disabilities are not forgotten in discussions about human rights and the UNCRPD. I have had to advocate for myself in mental health services. Something that would improve this for migrant people would be access to interpreters and translators.

There should also be a legal right to independent advocacy. There is an opportunity to make this happen in the reform of the Mental Health Act, which will be introduced before the summer recess.

Advocacy services should be fully funded. Cairde is an organisation working with migrants and providing mental health supports in different languages. It has worked on a cultural competency toolkit with Mental Health Reform. In my experience, there should be more training for people who are providing services to people with mental health difficulties and disability difficulties. For example, people working in social welfare offices should be trained in human rights, in the UNCRPD and in cultural competencies.

There should be more opportunities for employment for people with mental health difficulties and psychosocial disabilities. Some people do not even know that they can report discrimination to the Workplace Relations Commission.

When one is experiencing a mental health difficulty it can be very hard to self-advocate. Sometimes, I felt that I was not being listened to. The Assisted Decision-Making (Capacity) Act should make things better, but some people with mental health difficulties are still excluded from these legal protections. That is unfair and would not be accepted in other areas of life.

Finally, there is not enough support for advocates and advocacy and that means we cannot access all of our human rights. Please help us to change this.

Ms Neil Moore Ryan

I thank the committee and the Cathaoirleach, Deputy Moynihan, for the invitation to this meeting and for facilitating me to attend online. I also thank the team at Mental Health Reform for their support throughout this event and others I have been fortunate enough to attend.

To answer the question honestly, I do not believe my human rights, or those of many citizens and-or residents of this country have been supported. For us, self-advocacy becomes a necessity as we have to fight to access what we are entitled to. People with disabilities are frequently infantilised, degraded and not recognised as individuals with numerous capabilities who can flourish when their needs are properly met. Accessibility for everyone is just not regarded as truly important and many of the obstacles are based on ignorance, ableism and stubbornness. All of this can result in poor mental health on top of everything else.

Recently, I was involved in a committee discussing my experience of CAMHS.

In preparation for that, I spoke to many people who had been or were still in CAMHS. For many, myself included, this is the first step in our mental health journey, seeking answers for our struggles, which in my case was a late diagnosis of autism. The common experience reported to me was negative. If this is the starting point, imagine how difficult it is moving forward from that. My diagnosis was locked behind a paywall as I was gaslit by a medical system that was supposed to support me. I was denied an assessment that I had been asking for and was forced to go private, a luxury many people cannot afford but feel forced to do, as I did.

I also took part in a public consultation on the Green Paper on Disability Reform in November 2023. This was an incredibly upsetting event as the Government showed in plain terms its complete lack not only of respect for people with varying ranges of disabilities but also of competence on the extent of our experiences. The fact that what was suggested on that day made it to a stage where you looked at us, in person and online, and completely dismissed the multitude of access issues across this country and tried to force us into an inherently inaccessible workplace that many of us are not a part of, for good reason, shows a real lack of regard for people with disabilities.

I would recommend better training and education across all Departments on the varying needs and struggles of people with disabilities, with an acknowledgement of the toll on mental health. I would encourage community-led initiatives that focus more on individual support needs rather than broad strokes approaches. I truly believe this country and its Government are more than capable of supporting the rights of people with disabilities, as it is their responsibility to do. As one of the richest countries in the world, we can fund it, and people with disabilities are more than happy to return on that investment when given the proper supports.

An Cathaoirleach

I thank Ms Moore Ryan for joining us online. I call Mr. Kearney to make his opening contribution.

Mr. Gary Kearney

I thank the committee members, some of whom will know me. I was here ten years ago when I was five years out from becoming disabled. I am 15 years old as a disabled person and I spent 45 years of my life as an able person, so I know what I have lost. I know the difference between being able and being disabled - the financial cost, the social cost, all of it. That is added to the fact that I am invisible, although I am wearing purple so you can all see me. I am a second-class disabled person because I was not born disabled. You would not believe it. This is what I faced all of the way through the first eight years of my life as a person with disabilities.

If it was not for Headway, Dr. Elaine Kelly, who is my neuropsychologist, and my support services, I would not be here. For starters, they understood the mental trauma that you go through when you acquire disability later in life. I have two lives - I have up to 45 and I have now. As part of my recovery, we found that I needed something to fight for. I needed something to stand behind; I needed to believe. What had happened to me made me so angry, and that is what I went after. I fought for my rights - the human and civil rights that I had lost. I fought to get them back and not just for me, because I can actually survive quite okay in this world, but for everybody who is denied them. That is what I have been doing.

I am a practical person. I see something and I go to fix it. I was working with Irish Rail. I saw something so I said something, and we now have Changing Places. When I nearly got hit in the head by a bus mirror, I contacted Dublin Bus and Bus Éireann, and we now have yellow bus mirrors. These are simple little things but they are so important.

A few weeks ago, I was in a Leinster House dining room - perhaps the Ceann Comhairle's dining room or the Leas-Cheann Comhairle's - for the Getting Nowhere campaign that was launched by the Irish Wheelchair Association. It was the members, the clients and the wheelchair users who were there and they told of the problems. Last week, they raised access issues in the public realm through pictures and words written and organised by every single one of us who is disabled. These are very practical, simple things.

Then there is the technical side of it, for example, when we sign off to implement the CRPD. By the way, there is a way that we do things in this country. Some people would sign it and then implement it a year or two years later.

We do not do that. We wait ten to 12 years before we sign off on it. In this time, the Civil Service is supposed to have put all the regulations and laws in place to allow us to implement this convention as quickly as possible. Instead, we have gone backwards. The UNCRPD is very simple. We start at Article 5 and work on through to Article 30 and it will all fall into place. We, however, have gone backwards. The Department got out of this area, sort of. I refer to the funding provided to disability groups, to support services and to anybody looking for support. Our men's shed got cut off because we were not doing something new in Headway. Who do we have to go to see for it? It is the HSE. This means this matter is still within the remit of the Department of Health, which is against the social model of disability.

This is where my civil rights have gone. This is why I get angry and why I fight. I could not do it without Headway and without the support groups like the IWA and the DFI, because I rely on their expertise and we all work together. This is the other thing. If we keep siloing ourselves into smaller and smaller groups, then we lose the strength we have. This strength is that we are the biggest minority in this country. Instead of fighting about silly things, we need to all pull together and get what we deserve: our civil and human rights and to be treated like people first. Until we do that, we can be talking about 4.2, 3.7, or whatever, but we will still walk outside into the car park and find the markings are wrong for disabled parking spaces or we will walk outside the front gate and the tactile paving and other things will be wrong. People are being let do this because the UNCRPD is not being implemented and we are not being listened to. Two of the speakers mentioned the NTA, which is the biggest nightmare of our lives. We can see heads nodding everywhere here. This is the case because you are not listening to us, all of us, and you have to do that.

I am sorry if I get a bit emotional but that is the way I am. It goes with the brain injuries and the ADHD. I am talking about simple, practical things. All you have to do is ask Dr. Sinnott, me or any or all of us. We have this lived experience and this knowledge. Most people, I firmly believe, are not ableist. They just do not understand Article 8 of the UNCRPD concerning awareness. Hence the purple and the purple plinth. If a purple bus is seen going up and down the road saying "UN International Day of Persons with Disabilities", yes, that will be me. I turn things purple to make people aware, because awareness is the foundation of what we are doing. This is why I do what looks simple. Without this awareness, however, we are not going to get anywhere else. We can teach people. Sadly, eco-ableism exists. I could not believe it, but it is real. Now, I have found a new one, namely, ego-ableism. I thought of this one myself. I am proud of this. Ego-ableism is when an able-bodied person thinks they know more about disabilities than a disabled person. I will finish on this point. I thank the committee.

An Cathaoirleach

I thank Mr. Kearney very much. I call Ms Battersby.

Ms Eileen Battersby

I thank the committee for the invitation to be here. I am a self-advocate with lived experience of vision impairment. I am presently taking a course with the national learning network in Ballyfermot. It is a QQI level 4 qualification in employment-based training. My work experience is with Vision Ireland, which was the NCBI, where I assist the tutors and support the students in the National Training Centre on the Whitworth Road.

I have always had low vision. I have congenital cataracts. I found ways to negotiate the world with the help of my parents and family. I attended St. Mary's school for blind girls in Merrion in the 1970s, where I gained independence skills from my teachers and peers and achieved my leaving certificate.

I always wanted to study nursing but, because of my low vision, this became a hurdle too far. However, through my determination, I found a job in healthcare, as a healthcare assistant working with people with intellectual and physical disabilities for more than 35 years.

Unfortunately, over the years, my mental health suffered and, as a result, I discovered that I was actually in denial about my vision impairment for many years. I never disclosed this in my workplace because I feared losing my job. My fears were realised after I applied to Irish Guide Dogs for the Blind for a guide dog. I was matched with my first dog, Hattie, in 2012. After being on sick leave, I had to attend the medical officer before I could return to work. His decision was that I had no useful vision. As a result, my employment was terminated. I had been doing that job for 35 years. I was guided towards the NCBI, which is now Vision Ireland, and I found many ways of coping. In particular, I learned ICT skills using assistive technology. Now I am giving back.

In my work placement with people who are losing or have lost their eyesight, I enjoy helping people gain skills to live independently. We have designed a training kitchen equipped with adapted items at the national training centre of Vision Ireland. A very basic task is to make a cup of tea for yourself, but this can be very daunting for someone who has lost his or her sight. However, with the use of a one-cup kettle and a liquid level indicator, this task is really satisfying for those who have just lost their sight. We intend to continue that by giving people the chance of working, making their own breakfast and using a microwave and an air fryer.

Unfortunately, there are barriers for people who have visual impairments. For adults, these barriers relate mostly to employment. The provision of services to meet their education and training needs - a person who is losing his or her sight has to learn to live in a different way - is very beneficial but, unfortunately, the only such place in Ireland is the training centre of Vision Ireland. People who atttend the centre, particularly those from rural areas, find transport very difficult. It is important. If people get the right training and assistive technology, they can return to their work or gain employment. This all ties in to the cost of assistive technology.

The problem we all face is that sighted people do not really understand. A person who has a white cane or a guide dog is not necessarily blind. There are so many different versions of visual impairment. There is a need for a campaign to educate people on the needs and wants of those who have a visual impairment and how to support them. I would love to see the roll-out of something like what I am doing now, with the creation of places throughout the country to which people could go. I call them blind sheds, similar to men's sheds, where people can share their experiences. Many blind and visually impaired people have a lot to give, especially to people who are newly visually impaired. I am very new to all of this awareness around advocacy, but I want to do it and learn more because I know how important it has become.

I ask committee members to be aware that I do not see across the room so if they want to speak to me, I ask that they announce themselves to me and then I will be able to respond. Thanks very much for having me here today

An Cathaoirleach

Thanks. We were fortunate as a committee to meet Ms Battersby in Ballyfermot recently.

Ms Eileen Battersby

That is right.

An Cathaoirleach

Thank you very much. Mr. Alford is next.

Mr. Paul Alford

Good afternoon and thank you for inviting me to speak here today. I work for Inclusion Ireland. The committee asked me to talk about rights and how they can be supported. I lived in an institution for 32 and a half years, where I was told what do all the time and people thought I would not be able to live on my own. When I started working at Inclusion Ireland, I could not read or write because I left school very young as it was thought I could not learn anything. I asked at work for a course and went to the adult learning centre. By getting support I can now read, use computers and do online banking. My doctor knows how to explain things to me about my health in a way I understand. I have also learned how to keep my house tidy, cook and fix problems.

I tell people my story so others can learn about their rights and how you can change your life if you speak up. People do not see us having a life after school, being able to learn things, get a job or go to college. This needs to change. People should have the same hopes for disabled people as they do for everyone else because with the right support, we can have a good life. Respecting our rights has to start early, when we are children. Disabled people should be able to go to their local school with their siblings, friends and neighbours. This was not the case when I was a child and sadly it is still not the case today. Many children do not go to school with their brothers and sisters and have to go to a school far away from their home. Nearly 90% of teachers in a recent survey by Inclusion Ireland said that some children should not be in their local schools. Only 14% of children said they were enjoying school.

We also need to be seen as experts in our own lives and be listened to by families, professionals, Government, media and all other people.

Too often, we are not invited to events and group discussions and when we are, they are not accessible and we find it hard to take part. Some people have higher support needs. For example, people who are non-speaking will need someone who knows them well to support them and these might be non-disabled people, like a support worker or family member. If we do not accept this, we are excluding them and treating them unfairly. The supporter is as important as any other reasonable accommodation. We need to be listened to, be given the support we need to participate and work together to remove the barriers. All voices matter. Our voices, our choices and nothing about us without us, at the end of the day.

An Cathaoirleach

Thank you very much.

Mr. Paul Alford

Thank you for having me here today.

An Cathaoirleach

Your contribution is hugely important to us. Deputy Higgins will respond first. I hope all members will get an opportunity to speak in the afternoon.

Deputy Emer Higgins

I thank all of our guests for being with us today and for sharing their experiences. To Gary I would say that today is an anti ego-ablism day. It is a day for engaging with the people who sit on the disability matters committee and we sit on this committee because we know that disability matters, that civic and human rights for all matter and that inclusion matters. Today is about us listening to our guests. It is about us listening and bringing their suggestions and solutions to the Government because we know that all of their voices matter. Their contributions today are particularly valuable because they are based on lived experience, whether that is the lived experience of dealing with the NTA, of accessing healthcare, employment and education or accessing basic facilities like accessible toilets and changing places, regardless of whether their disability is one that they were born with or is acquired.

Today we have heard very grim experiences and we hear them very regularly at this committee, unfortunately. That is the sad reality. We hear of grim experiences when it comes to the lack of access to CAMHS and to appropriate healthcare. When I say appropriate, I am including Donna's example, which really sums up the situation. I am probably going to get into trouble with the HSE for saying this but I am referring to the HSE's focus on enabling people to exist rather than to live. We should be giving them everything they need to live a meaningful life and that includes leisure. It is not just about getting around but about everything that every able-bodied person has, which everybody with a disability should have as well.

What we have heard today are not just the challenges and failings but also the solutions. Annette spoke about a fear of being seen as a serial complainer but I would see her as a serial solution provider. What she provided today was a list of very practical, easy-to-do solutions that could be implemented if the will and the budgets were there and which would make a practical change to people's lives. We have heard solutions from everybody. Paul gave us solutions around empowering independent living. Eileen gave us solutions around empowering people in the workplace and her experience was absolutely dreadful. That is why the co-creation of policies is so important. We heard from Donal that he had to go outside the State three times.

That should not be happening. We should be doing this within the State. We have heard about the practical challenges that Justyna and her colleague face when it comes to CAMHS. That should not be happening either. If we had that proper co-creation at a departmental level, we could iron out many of these issues. That is how we would avoid, to use Gary's phrase, ego-enablist policies. Instead, we would arrive at genuine, inclusive improvements through collaboration. That is what all of us in this committee want. We all firmly believe "nothing about you without you"; that is for sure.

I welcome that the incoming Taoiseach, Deputy Simon Harris, has committed to establishing and chairing a Cabinet committee that will expedite changes when it comes to the rights of people with disabilities. That includes addressing the backlog in assessments, which is critical. We have made strides in areas like special education and the introduction of new college courses for students with intellectual disabilities, but there is so much more that can be done, as the witnesses have clearly outlined.

This year, as the witnesses know, the Government aims to ratify the optional protocol to the UNCRPD at last. This is a step forward in the Government's commitment to inclusivity and human rights. We cannot make those strides without the organisations before us. I thank the witnesses for taking the time to come here, as the Vice Chair mentioned. Many people take time off work to attend committee meetings like this and they incur expenses in doing so. I thank the witnesses for doing that. The contributions of Annette, Donna, Donal, Justyna, Neil, Gary, Eileen, Paul and all the people we have heard from today and will hear from later are so important. We thank them as a committee. We are listening.

An Cathaoirleach

We will suspend the meeting and discuss questions Nos. 3 and 4 in the afternoon. There is lunch in the coffee dock for all of you. Please join us and we will try to talk to you during the lunchtime.

Sitting suspended at 12.47 p.m. and resumed at 2.15 p.m.

An Cathaoirleach

We will resume proceedings. The screens are on, so we are okay. The question we are seeking to answer is how we can ensure equal access and human dignity in public services.

Before we begin, all witnesses are reminded of the long-standing parliamentary practice that they should not comment on or make charges against a person or entity by name or in such a way as to make him or her identifiable, or otherwise engage in speech that might be regarded as damaging the good name of a person or entity. Therefore, if their statements are potentially defamatory with regard to identifying a person or entity, they will be directed to discontinue their remarks, and it is imperative that they comply with any such direction. Members are reminded of the selfsame practice.

We have a number of speakers on the question of how we can ensure equal access and human dignity in public services. To kick off the afternoon session, we have Mr. David Young.

Mr. David Young

I thank Mairead and Tracey for their tremendous organisational skills. I also thank the members of the committee.

Over the weekend, I watched a number of videos of the committee's previous meetings. I was struck by the sincerity of the representatives. I would temper that, though, by saying that many of the matters we are discussing need to be resolved. There have been promises made by elected representatives for many decades to resolve them. While I do not doubt the sincerity, what counts when it comes to the human rights of disabled people is not sympathy or words; it is concrete action.

The first thing I got from the morning session was a reinforcement of the understanding that disabled people are not a monolith. I am an amputee. I was born with a congenital birth deformity of the left leg that led to an above-knee amputation when I was 17. As members may have guessed, I did not grow up in Ireland. Interestingly, however, I received my Irish passport this morning. I am very proud to be a citizen of a republic and not the UK.

My experience as a disabled person has been very positive for two reasons, and they are two reasons that speak to the work of this committee. I had parents who advocated for me and I was born at a time, post 1945, when the welfare state was in its full pomp. Ireland is the only country in the European Union that does not guarantee provision of prosthetics for amputees. That is shameful. I did not have to deal with that growing up. When I speak to people in this country and tell them that, they are disbelieving.

As it currently stands, anyone with a lower or upper limb amputation is offered their first prosthetic free, as it is State-funded. After that, people are fed into a system that has to be seen or experienced to be believed. People can either apply for a medical card which is means tested and can be - and often is - withdrawn from amputees or they can self-fund. If people are lucky enough to have the money to pay for private health insurance, VHI will make a contribution. Among insurers, VHI is unique in this regard and should be applauded.

The alternative, as has been the case with prosthetics and orthotics, is that people can resort to crowd-funding. We have people in this country whose prosthetics and orthotics - the basic devices they need to function and take a full part in society - have been obtained through crowd-funding. It is absolutely shameful.

I was born with a congenital birth deformity but I had someone who could advocate for me and I also had access to prosthetics. Attitudes in the UK were not great at that time either. It was suggested to my parents that I attend a school for people with severe learning disabilities and special needs. My parents were very much in favour, as I am, of full integration of children with all disabilities into the wider education system. This is not only because it benefits those children but because it benefits the wider community as well.

Because of all those things, I was able to go on to university at Oxford, where I studied economics and politics. I went on to do my master's degree at Columbia University in New York.

My main suggestion is that means testing be withdrawn for people with permanent disabilities. We have to do that. Doing so might involve creating a slightly different medical card. Many amputees have told me that they do not necessarily need all a medical card provides but they do need access to prosthetics or a wheelchair. Means testing must stop. As an absolute minimum, the HSE should stop asking amputees or those with spinal injuries if there has been any change in their condition. When a person's leg is amputated, their condition does not change. If it does, believe you me, we will see it on RTÉ.

There has been a lot of discussion about intersectionality. Thankfully, I have a 23-year-old daughter, so she can explain things like intersectionality to me and keep me up to speed. The most crucial part of intersectionality when it comes to dealing with social welfare and the HSE is social class. If people do not have the money or the cultural capital - as I, fortunately, have had because I have had a lot of opportunities - they are on a hiding to nothing. Of course we want to think about our LGBTQ+ brothers and sisters and about people who have come here from other countries. However, we need a system set up so that people do not have to go out to bat against what is frequently an antagonistic and oppositional HSE in order to function on a day-to-day basis.

Mr. Éanna Kelly

A Cathaoirligh agus baill an choiste, Dia dhaoibh agus gur raibh maith agaibh as an gcuireadh labhairt os comhair Thithe an Oireachtais.

Is mise Éanna Ó Ceallaigh, tá mé 13 bliana d’aois agus líofa sa Ghaeilge. Chaill mé mó chos dheas nuair a bhí mé dhá bhliain d’aois ó ghalar meiningítis. Inniu, beidh mé ag labhairt faoi dhínit an duine agus cearta sna seirbhísí poiblí.

My name is Éanna Kelly and I am 13 years old. I lost part of my right leg from meningitis when I was two years old. I am self-advocating for kids with lower limb amputations. I love my language, fairness and equality. I want to speak to the committee about fairness and equality regarding human rights and dignity today.

Following my amputation, the State provided the first leg but after this, I kept getting refused a medical card to allow me to get more legs. My parents were means tested for the medical card and were refused. It took a while before a medical card was given to me based on my condition and then it was only for two years. After two years my parents had to re-apply and go through another means test, only to be refused again. This is a very stressful and intense application process and even the renewal letter asked if my condition had changed.

My experience is that prosthetic legs are built to a budget rather than for comfort or function for a person. The impact is that you are denied parts that are useful or can help the leg function better.

More importantly, the budget means you are only allowed one leg at a time. Kids like me want more than one leg because one does not cover all the activities we want to do. I have to settle on the best “all-rounder” leg to meet most of my needs. The impact of settling is that I am held back. How I compete in sports and how I manage at school and at home is determined by a HSE budget. My choice is taken from me.

I have represented Ireland at European games for amputee football six times now and I see how kids from other countries have legs for sport in addition to their day-to-day walking legs. Ireland is the only country at these games where this is not standard for its kids.

I asked my prosthetists how long it takes to build a leg. They said it takes a week if they continuously work on it, but in reality it takes months. The biggest part of the delay is getting sanction from the HSE. I am growing and changing shape, which often means my leg does not fit me after a few months and my prosthetists are often left to patch up my leg to get a longer life out of it. The impact is often injury. My leg gets cuts and sores, which then leaves me unable to walk, all because the priority is budget over a functioning leg.

My school is not equipped to handle my leg not being useable. There are no crutches or wheelchairs available. This has happened and I am left to crawl on my hands and knees to get about

school. I could hop, but try that with a school bag and busy corridors not to mind the health and safety regulations.

These are my recommendations. First, amputees should not be means-tested for a medical card, ever. Stop asking us if our condition has changed. Second, amputees should be allowed more than one leg at a time depending on needs and function. Some may need an additional leg or parts and some may not. It is individual and depends on the needs of the person at that time. Third, schools should be equipped to manage situations where an amputee student has a leg that is not usable. Fourth, prosthetics should not take so long to be sanctioned. We are not being a burden on a budget. We want to grow to be contributing members of society and pay back more than we take.

When I have a leg I get to walk. I know this is a privilege, as many people cannot get to walk. I have spoken a lot about legs, different types of legs and budgets but I need the committee to realise that attached to the prosthetic is an actual person. This person has freedoms, choices and rights the same as anyone else but this is overlooked in all I have spoken about so far.

Four years ago I was mentioned by name, here, in the Houses of the Oireachtas with regard to these issues and despite intentions there has been no progress. Is everyone who makes policy waiting to see if my condition changes?

Go raibh maith ag an gcoiste as éisteacht liom faoin ábhar seo agus as an gcuireadh labhairt os comhair Thithe an Oireachtais.

Mr. David Digan

I am a 39-year-old father of a seven-year-old daughter from County Westmeath. I am a self-advocate single-arm amputee. I have been advocating for change in the primary medical certificate criteria as the 1968 outdated criteria only include six disabilities and the category of single-arm amputees is not one of them. The UNCRPD law is being breached by the Government and my rights are being hindered because of various barriers due to the primary medical certificate, PMC, criteria. I am being isolated from my local community and it is affecting my participation in society on an equal basis with others.

I need to be able to afford to run my car so I can attend hospital appointments in Dublin for both me and my daughter.

I also need to travel to collect my daughter, who lives 20 km away. The free travel pass does not bring me directly to any of these places. My annual car tax is €710 as I have an older car. I am on disability allowance so this is leaving me to choose between food or tax on my car.

I have advocated for myself through social media, newspapers and radio interviews. I have gone to many TDs, who have sent letters to the Department of Finance. I and my partner have emailed the Department of Finance, the Minister for Health, the Minister for Children, Equality, Disability, Integration and Youth, the Minister of State at that Department and the Taoiseach, Deputy Leo Varadkar. All of the Ministers emailed back to say that it is the Department of Finance that is over the primary medical certificate. Deputy Carol Nolan asked the Taoiseach, Deputy Varadkar, at Leaders’ Questions on 30 January 2024 to amend the PMC criteria and in his response, he committed to reviewing the PMC criteria and to talking to the Minister for Finance about the criteria. To date, nothing that was promised has been done.

The Minister for Finance’s private secretary replied to me and my partner and the following was stated in that email: "The Department has carried out a review of the Disabled Drivers and Disabled Passengers scheme (DDS) and has found that it is no longer fit for purpose due to the narrow medical criteria on which it is based". The email goes on to say that the national disability inclusion strategy transport working group, chaired by the Minister of State, Deputy Rabbitte, endorsed proposals to replace the DDS and noted that these were clear deliverables for the future. However, its report did not set out the next steps. The talks have been ongoing since 2021 but there has been no change and no steps have been put in place for this proposed new scheme. The board for the primary medical certificate resigned in November 2021 as they too believed the current criteria were not fit for purpose.

The key issue is that the Irish Government is not abiding by the UNCRPD that it signed up to in 2007 and ratified in 2018. It does not meet the needs of a significant group of those with disability impairment. It requires the disabled person, like myself, a single-arm amputee, to prove they are sufficiently disabled. This is isolating individuals with disabilities like myself and not including us as equal individuals in the community.

The EU Charter of Fundamental Rights, Article 26, Title III: Equality, is entitled "Integration of persons with disabilities". I think this needs to be used as a platform by the Irish Government as this will ensure that people with disabilities, like myself, benefit on a personal, social and occupational integration level in society.

I ask members to refer to the evidence I have provided about the UNCRPD on page 11 under “Reasonable Accommodation”. It states that the UNCRPD elaborates for the first time in a legally binding international human rights convention the concept of reasonable accommodation, explicitly linking it to the relaxation of all human rights - civil, political, economic, social and cultural - and embedding it within the non-discrimination mandate. “Reasonable accommodation” is any facilitated change that is required to enable a person with a disability. "Reasonable accommodation" is also a central theme of the UNCRPD. Article 2 of the UNCRPD states: "'Reasonable accommodation' means necessary and appropriate modification and adjustments not imposing a disproportionate or undue burden, where needed in a particular case, to ensure to persons with disabilities the enjoyment or exercise on an equal basis with others of all human rights and fundamental freedoms”.

Article 5 of the UNCRPD states that the function of reasonable accommodation is to promote equality and eliminate discrimination. The UNCRPD defines the denial of reasonable accommodation as a mode of discrimination. What is discrimination in the eyes of the UNCRPD? It states that discrimination on the basis of disability means any distinction, exclusion or restriction on the basis of disability which has the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise, on an equal basis with others, of all human rights and fundamental freedoms in the political, economic, social, cultural, civil or any other field. It includes all forms of discrimination, including denial of reasonable accommodation. Therefore, one thing is clear from reading the “Reasonable accommodation” section of my evidence.

It is clear that the Irish Government is not holding up the UNCRPD law as it is in breach of my rights, as a disabled person, and I cannot integrate with my local community socially. I need some sort of independence in my life. Is losing one arm not enough to qualify as disabled? I am paralysed for the rest of my life. I have a long-term disability. The Irish Government last year spent €1.3 million on advertising the fact that disability rights are human rights. If that money was invested in supporting people with disabilities, we would not need this meeting.

People with disabilities must play cat and mouse to find out information to try to get what we are entitled to. The fact I have to speak to the committee about this issue is a disgrace. Being a disabled person is hard enough but now I have to fight for what I am entitled to. I want my independence and do not want to be relying on others for transport. It is shocking that in this day and age, I have to talk to the committee about how, as a disabled person in Ireland, I am being fobbed off by Ministers and not getting help or support from the Government. The least the Government can do is include other disabilities such as single arm amputees in the primary medical certificate, PMC, criteria. This can be done by the members of the committee who are sitting in front of me today as the UNCRPD law is being breached.

We do not need more committees or reports but clear leadership and action. I will continue to highlight this shameful neglect until real and tangible progress is achieved in this area.

Ms Jane O'Keeffe

My name is Jane O’Keeffe and I am a 38-year-old mother of one from Cork. I will give the committee a brief history of how I became an amputee. Roughly this time three years ago, I was pushing my then five-month-old daughter in her buggy when my right hand started to get a bit sore. I did not think much of it at the time but it was still a bit uncomfortable a few weeks later so I decided I would go to a physiotherapist. She said she could feel something there but my right hand still looked exactly like my left hand, there was nothing visible, and I was getting relief from visiting the physiotherapist. She said it was probably the result of pushing the buggy too much and we laughed it off as a buggy-related injury.

After another few weeks had passed, I was still in a small bit of discomfort. I was waking every few nights with a kind of burning pain in my hand. I decided to go to see my GP. He referred me for an MRI even though he could not see anything wrong either. He suggested that maybe I had a ganglion cyst. I am in no way medically minded but when I saw the MRI image, even I knew there was something in my hand. A 3.9 cm tumour had perfectly filled the gap between the bones and tendons of my right hand.

I was referred to a plastic surgeon. When he saw the MRI, it was the first time I heard mention of the word "sarcoma". He said it may be a sarcoma or a giant cell tumour, which sounds awful but is actually benign.

I was then sent for a biopsy, which was by far the most painful thing I have ever had in my life. The results of the biopsy took longer than I had expected to come back and the longer it went on, the more I was thinking we might be dealing with something a little more serious than we had hoped. The biopsy had to be sent to London for testing due to the rarity of what I have. At the end of November, I was diagnosed with clear cell sarcoma. Sarcomas make up about one in 100 cancers and clear cell sarcoma makes up less than 1% of sarcomas, so it is incredibly rare. Approximately one in 6.5 million people are diagnosed with this.

Given the rarity of clear cell sarcoma, Cork University Hospital reached out to University College Hospital London for advice on how to proceed with my treatment. Because clear cell sarcoma does not respond to traditional therapies such as chemotherapy and radiotherapy, the decision was made on 10 December 2021, the day after my daughter’s first birthday, to amputate my hand four days later. Life since the amputation has been relearning everything I had taken for granted my whole life. Those things include dressing myself, tying up a zip, tying up my hair, tying a pair of skinny jeans, cutting a pepper, buttering a slice of toast, dressing Róisín, changing her nappy and, obviously, driving. I had driven a manual car my whole life and was driving one at the time of my amputation, which was rendered useless to me. On my discharge from hospital, I was told that I would qualify for the PMC, which would help towards purchasing and adapting an automatic car for my use. However, I was horrified to learn that because I only had one hand amputated, and not two hands, I did not meet the criteria for the PMC.

The cost of purchasing and adapting the car was about €32,000. Obviously, I did not have a spare €32,000 lying around. If I had and had not been diagnosed with cancer, I would have gone on a great holiday. With the help of my family, we managed to purchase and adapt a car. I have never once asked "Why me?" or got upset about getting cancer. The only time I have really got upset in the past two and a half years was due to the lack of support from the Government in helping me get back to being a normal, active citizen. I work as a teacher. I could not wait to get back to work but I felt that I was being met with roadblocks the whole way.

The stringent criteria relating to the primary medical certificate directly contravene the UNCRPD. The purpose of the UNCRPD is to protect, promote and ensure the full and equal enjoyment of all human rights and fundamental freedoms for all people with disabilities. There are 26 points in the UNCRPD, three of which are accessibility, personal mobility and equal recognition under the law. I do not think I really need to say more about the primary medical certificate and the UNCRPD.

Unfortunately, my cancer has returned, so we are not sure what the future will hold for me because it is now stage 4. I felt so strongly about the inequality with the primary medical certificate for single-arm amputees that I wanted to give up a day of my life to come here and speak to the committee along with everyone else. What I would like members to take from my speech today is go home this evening and set an alarm for one hour and for that hour, to do everything with one hand. Try to do up a zip, dress yourself, close the button on your skinny jeans, chop a pepper, make the dinner, butter a slice of toast or change a nappy. These are things that we have to do every single day because we do not have a choice. After that, please tell me that we should not qualify for the primary medical certificate.

Mr. Paul Fitzsimons

Good evening. My name is Paul Fitzsimons. I am 56-year-old married man. I have two sons and two grandsons. Jane has not mentioned that there are probably five of us in the whole country who have this very rare cancer and have lost our arms as a result of it. It is hard to deal with that type of stuff. I lost my arm back in 2019. Previously, I had been a driver with Dublin Bus for many years. My whole life revolved around having my arm. I played guitar in a band, rode motorcycles and had a really good life. It was all turned upside down when I lost my arm back in 2019 as a result of sarcoma cancer. I was operated on in St. James' Hospital.

I applied for the primary medical certificate on two occasions. I did so most recently in January, when I was turned down again. I am a big advocate for upper body amputees. I am chairman of one of newest clubs that is growing in west Dublin. It is a soccer club. We have more than 100 people between the ages of 18 and 24 playing every week. With regard to the primary medical certificate, if I am not mobile, I cannot do my voluntary services in the community. It is a big thing for me to be mobile and independent. I have two grandkids who are my whole life. As Jane says, I still change nappies, even as a grandparent. My wife and I mind them during the daytime. I am involved in various other clubs too.

There is a little story I would like to tell the committee. When I had my arm taken off, a very good friend of mine had the lower part of his left leg taken off. He is a very strong individual. He got a prosthetic leg. He is now jogging on that leg. When he sits in an automatic car, he does not need his left leg to drive it. When I came out of hospital, I could not get any help with a car. I had to borrow money to try to buy an automatic car. That is where I was with that. There is a funny story. The two of us went into Lidl. I was trying to hold a bag open and put my messages into it with one hand, and the bag wanted to close itself as I picked up one of the things I bought. In the end, he was there with one leg holding the bag and I was there with one arm loading it.

There are little things, as Ms O'Keeffe said, if the committee members take a little time today when they go home, take their arm out of their jacket, zip it up and see how they get on for an hour. It is not easy to do. I have the highest respect for all these guy here who are in wheelchairs who are missing lower limbs but with the CRPD, we are being discriminated against as upper-body amputees. There are over 1,000 people trying to achieve a primary health certificate at present. It is not a lot to ask for. People should be granted this.

There is a guy who is probably the poster boy for robotic arms. I was very lucky to have a really strong community around me and through all sorts of fund-raising, I got a bionic arm but because they are a bit finicky, it has spent more time over in England than it has on the end of my arm. This particular guy up the North's name is Stephen Lowry. He is well known. If anybody knows of the Ottobock centre, he is the poster boy for it. He gets everything paid for because he is in Northern Ireland. He comes down here to deal with the Ottobock centre. If I want to insure the arm I have for three years, it would cost €15,000. I am on invalidity pension and do not have that money. Basically, it means at the end of the two years that the insurance has been provided for, the hand that cost €31,000 and the lower arm, which was paid for by the HSE and which costs €28,000, will become a paperweight. If anything goes wrong, I will not have the money to go and pay for the update of that. It does not make sense to me for the Government to pay €28,000 towards an arm that will become a paperweight. In my opinion, they should at least be providing the updates and coverage of the insurance.

As regards amputees, I was turned down as well for the parking badge - the blue badge. When I come out of a shopping centre now, I have to park miles down and walk by empty wheelchair bays. If you have ever tried to push a shopping trolley in a car park with one hand, you would do well to not get sued for damaging somebody's car because all of those shopping trolleys have a mind of their own - they go everywhere. It is merely one difficulty. When going through airports and taking off your arm in front of people, you have got to ring ahead, get a room, go in and get your checks done offside because while it does not bother me, I am sure other people do not want to see a fellow my size stripping off at the airport. It is not doable. It is not right. A little humanity could be shown to us.

There is a bit of discrimination going on with the primary health certificate. Mobility is everything in this country. If you can get out and have independence, you can be involved with society. You can be involved with the community. If you take that away from people, they are prisoners. That is where we are.

I do not want to go any further on this but that is my point of view here today. Much of the other stuff was covered by Mr. Digan and I am sure the other two speakers here beside me will cover the rest of it. I thank the committee.

Mr. Jamie Kent

I thank the committee for inviting me here today.

I feel partially one of the luckiest people in the room having heard the speakers who have gone before me today but yet I have a problem which has been going on since 2005. Basically, I am not disabled enough.

I am Jamie Kent from Waterford. A little over 20 years ago, at the age of 28, I suffered an accident while competing in a motorsport event in Cork. It was a split-second that would change my life forever. Before 4 October 2003, I was an active person running a business and living life to the full. That day I broke my knee, my pelvis, my back in two places and had multiple fractures in my skull. Along with this, I also suffered three bleeds in my brain and more in my brain stem. Luckily with the help of the medical team and life-support equipment at Cork University Hospital, I regained consciousness some two and a half weeks later. During a seven-month stay in CUH, I became a toddler all over again. I spent that time learning to walk and talk and I even went back to nappies. At 28, it was truly devastating. From there, I was transferred to the NRH for an extra two and a half months' further rehabilitation.

The years that followed involved extensive physiotherapy, hydrotherapy and follow-up operations. Now I live as a traumatically acquired brain Injury "survivor" in receipt of invalidity pension due to my high level of disability. My injuries left me with paralysis down my left side. With time and determination, some use has come back in my left leg, making it a little easier to get around.

In 2005, I applied for a primary medical certificate so I could have some relief under the disabled drivers and passengers scheme. This was instantly denied on the grounds that at that stage I had one good arm and one good leg and therefore did not qualify under the strict rules laid out by the Government. As the committee will be aware, to qualify for tax relief under the scheme, you must have a valid primary medical certificate. Naturally, I appealed the decision to the disabled drivers medical board of appeal at the NRH, but my appeal was rejected. I have applied five times since and have been rejected four times. On the fifth attempt the board of appeal was suspended so I was left with nowhere to go.

Between all my applications, I have spoken to TDs, a Senator and medical professionals in the hope that they might be able to help me, but the answer has always been the same: that the criteria needed to obtain a PMC are so strict that their hands are tied and there is nothing they can do. I feel this is a disgrace and clearly breaches the United Nations Convention on the Rights of Persons with Disabilities. The criteria needed to obtain a PMC are so archaic that it is not fit for purpose in today's world.

As I have said, I am in receipt of invalidity pension but I also have a disabled parking permit and a plus-companion travel pass due to my mobility and balance issues being so bad. On refusal of my first application for a PMC, I was successful in acquiring a motorised transport grant, which are no longer available, to adapt my car to my needs. To sum up, the system is totally mixed up. How can numerous Departments recognise my disability yet one stands alone and rejects my disability repeatedly, saying I am not disabled enough? In effect, the State is contradicting itself.

Even today, sometimes I am not able to use public transport if there is nobody available to escort me on my journey. Travelling by car, while the safest option, is expensive for a person like me with no relief on fuel or parking close by, not to mention no remission of vehicle registration tax, VRT, and repayment of value-added tax for the purchase of the vehicle, road tax, tolls, etc.

How can we ensure access and human dignity in public services? The requirements for a primary medical certificate, I feel, need a complete overhaul. The tax relief scheme applicable on obtaining a primary medical certificate would greatly improve my quality of life for my remaining years living with a disability. Broadening the criteria applicable to obtaining a medical certificate would greatly improve the quality and independence of life for people like me. As the cost of living is increasing day by day, if we could avail of the disabled drivers and passengers scheme as we have to drive an adapted vehicle, it would ensure we could drive without the worry of rising costs associated with such a vehicle. As I constantly live in chronic pain, my need for a PMC is only going to become more acute, so the criteria need to change for me sooner rather than later. It is not that we want to get something from the Government; we just do not want to pay something that was against the UNCRPD in the first place.

An Cathaoirleach

Thank you very much, Jamie. I call Mr. Michael Mac Aogáin.

Mr. Michael Mac Aogáin

Tá áthas orm a bheith anseo chun labhairt leis an gCathaoirleach agus leis na Teachtaí Dála tráthnóna. Is mise Micheál Mac Aogáin.

My name is Michael Mac Aogáin. I am a 62-year-old citizen of this country, Ireland. I was born and raised in Dublin and have lived for the past 28 years in a rural part of County Wexford. For most of my life I knew nothing of disability. I ran my own electrical services company in the south east and life was good. However, all of that changed at 10.30 a.m. on Tuesday, 10 June 2008 when I was involved in a motorcycle accident. I should not be here, but I was given a second chance at life. I got to see my children grow up and become very successful in life.

Following the accident, I was taken from the road by helicopter and spent two weeks in intensive care in Hospital Lapeyronie in Montpellier. I was then brought back by air ambulance and spent ten weeks in Dublin hospitals. I suffered a severely broken left ankle which is multi-plated and screwed to this day. I damaged the phrenic nerve on my left side which leaves me with paralysis of my left diaphragm and has effectively left me operating on one lung for the past 16 years. I broke two ribs on my left side. I broke my collarbone, which is also plated. I shattered my humerus, shattered my radius and ulna, and broke my hand. I have root avulsion of C5, 6, 7, 8 and T1 of the left side of my spine, which left me with flail arm, an upper spinal cord injury.

I am also asthmatic, have type 1 diabetes and suffer from chronic pancreatitis. Following the accident, I employed people to do my work while I had to step back and come to terms with my disability. My mental health suffered from this.

Since 2008, I have applied nine times for a primary medical certificate and been refused each time. The last occasion was on 16 January of this year. My appeal is scheduled for 16 May and I expect to be refused again. I find it strange that the Disabled Drivers Association of Ireland and the Irish Wheelchair Association consider me as being a disabled driver and yet my Government does not. It seems to think I am not disabled enough and has penalised me financially by not giving me a primary medical certificate.

In 2017 at the age of 55, I started an honours degree course in applied social studies which I completed with first class honours. One of the modules of this course was disability studies and included the UNCRPD. I believe that my Government is in breach of Articles 4 and 20 of the convention. Article 4 states: "States Parties undertake to ensure and promote the full realization of all human rights and fundamental freedoms for all persons with disabilities without discrimination of any kind on the basis of disability." Article 20 states:

States Parties shall take effective measures to ensure personal mobility with the greatest possible independence for persons with disabilities, including by:

a) Facilitating the personal mobility of persons with disabilities in the manner and at the time of their choice, and at affordable cost...

Before Christmas of last year, our Government spent a large amount of taxpayers' money on advertisements on the national airwaves stating that disability rights are human rights in accordance with UNCRPD. However, it continues to discriminate against disabled people like me. By denying me a primary medical certificate, I would argue that the State is in breach of these two articles because it discriminates against me purely on its perceived view of my disability. The State only allows for lower-limb spinal cord injuries, leg paralysis or loss of lower limbs. Therefore, it is discriminating against me on the basis of my disability. I again refer to Article 4.

I argued to the Disabled Drivers Medical Board of Appeal that if I had lost my leg or foot, I could get a prosthesis and walk again, and it agreed. If you are left or right-handed, I ask you to put your left or right hand behind your back and show me how you tie your shoelaces, do up a tie, zip up a coat, butter a piece of toast or cut up meat in a restaurant. While I could walk again following a leg amputation, if I get a prosthetic arm, will I ever get the full use of my hand again? Which is the more disabling of injuries? However, my disability is not considered severe enough to allow me to be considered for a primary medical certificate, which I consider to be a blatant breach of UNCRPD.

The new Disabled Drivers Medical Board of Appeal was meant to be non-judgmental in adjudicating on people's disabilities against a new set of criteria for primary medical certificates. However, it is still judging people against the outdated criteria, making decisions that have a severe detrimental effect on people's lives, which it knows to be wrong.

They know this to be wrong because the last board of appeal stated en masse that the criteria were too restrictive.

The Government is certainly not trying in any form or manner to implement any of the articles previously mentioned. The State continues to discriminate against the disabled population in many ways and on many fronts. Discrimination by the Irish State against persons living with disability in 21st century Ireland is something about which we as a nation should hang our heads in shame in terms of not providing care, equality and social inclusion to people living life with severe disability, through no fault of their own.

If the Irish Government wants to improve its compliance with and adherence to the UNCRPD and provide access and human dignity in public services, it needs to ensure all Government agencies and bodies adopt the HIQA and HSE principles when dealing with people living with disability, namely, the FREDA principles - fairness, respect, equality, dignity and autonomy.

From listening to me today I hope members take away a concrete understanding of how unfairly my fellow sufferers of this injury and I are treated by the State, in contravention of the UNCRPD, in particular by the Disabled Drivers Medical Board of Appeal. We are treated with disdain and contempt for having the audacity to challenge its judgment on injuries of which it has no understanding or towards which it has no empathy. The board is patronising and condescending towards us in making its decisions not to give us justice in accordance with the UNCRPD. The board passes judgment on the lives of people for whom it has no understanding of how hard and difficult life is with an injury like this. What I hope to take from talking to the members as legislators today is a firm commitment that they will treat us fairly and justly, in accordance with the UNCRPD, and give us the primary medical certificate, which would allow us to continue to work and contribute to society, and move on and recover from this horrible injury.

Finally, I will address the Government and Independent Deputies on this committee who support the Government. They have the opportunity to do what they know to be the right thing and make a profound change in my life and that of my fellow sufferers with a similar disability by making the Government give us a PMC as a condition of their support for Deputy Simon Harris to become the next Taoiseach of our country.

I have given up the opportunity to avail of a medical procedure in a Dublin hospital to come here and talk to members today. I just hope it has been worth it.

An Cathaoirleach

I thank Mr. Mac Aogáin very much. I now invite Ms Kathy Forde to make her presentation.

Ms Kathy Forde

The members of Tick Talk Ireland thank the Chairperson and the Joint Committee on Disability Matters for the invitation to attend here today and discuss our role in self-advocacy under the UNCRPD. We are here to provide an insight based on our lived experiences that patients with Lyme disease and co-infections are adequately represented and treated in a timely manner while adhering to international best practice. We feel strongly that there needs to be greater awareness of Lyme disease if we are serious about protecting quality of life, dignity and human rights. The pervasive culture of ambiguity must cease immediately. It is imperative such treatment is administered through a centre of excellence, preferably in Ireland.

Lyme disease is one of the fastest growing vector-borne diseases in the western world, and the threat it poses has become increasingly apparent in recent years. New cases of Lyme disease in the United States are more common than breast cancer, HIV, AIDS and tuberculosis combined. It is likely that more than 14% of the world's population has had tick-borne Lyme disease. Lyme disease bacteria is spread to humans through the bite of an infected tick. Lyme disease is known as "the great imitator" as symptoms are non-specific and can mimic many other conditions such as myalgic encephalomyelitis-chronic fatigue syndrome, ME-CFS, fibromyalgia, anxiety, depression, Alzheimer's and Parkinson's. The chance of misdiagnosis is high.

Ticks are often referred to as "nature's dirty needles" because in addition to Lyme disease, they can, while feeding on mice, birds, and other animal hosts, carry numerous other infections known as co-infections. Infected ticks have been found all over Ireland in woodland, open countryside and even in urban parks and gardens.

Lyme disease infection can occur at any time of the year.

Early diagnosis and prompt antibiotic treatment are crucial to prevent life altering complications. Symptoms include, but are not limited to, fever, chills, headache, fatigue, muscle and joint aches, swollen lymph nodes and may occur in the absence of rash, along with multiple other symptoms. It is irrefutable that there is a culture of medical ambiguity worldwide, with inappropriate timely interventions for patients and their families, that are not aligned with best practice on multiple fronts. Its impact is such that it can lead to family break-up, the sale of the family home, sustained heightened stress levels, child and parent alienations over many years. This is further exacerbated and compounded with patients regularly experiencing unequal access to and in the quality of legal services, such as differences between public and private legal practice and gender bias through the courts.

We have deep concerns that persons with Lyme disease continue to face barriers with their participation in society as equal citizens. The fact that the majority of persons with Lyme disease are pushed into poverty enforces the critical need to address the negative impacts accordingly for the patients and society. The over reliance on delisted and discredited guidelines has seen people with Lyme disease question their own sanity, emotionally invalidated, ignored, maligned, misdiagnosed, denied medical treatment and adequate care. Quite simply, lives are being put at risk.

Not having access to modern, accurate testing, diagnosis and treatment is significantly impacting people’s health, degrading individuals rights and dignity, is a human rights violation. Internationally accredited laboratory testing within the EU is being ignored. Policy needs to adequately reflect the fluctuating nature of the realities people with Lyme disease live with. We seek the implementation of medical treatments with a whole-system approach for the care of patients with Lyme disease. Together with the pooling of knowledge with the patient, based upon honouring the interconnection of the whole person, the pathology they are faced with and the multitude of treatment options that are available to formulate customised treatment plans. In the same way that clinical attention, public awareness and funding were brought to the issue of HIV-AIDS and other once-mysterious conditions, this must be done for Lyme disease today. We are solution focused and will be happy to contribute in any way we can to develop these outcomes. We need urgent intervention which is based on best practice. Far too many medical personnel across disciplines have been happy to adopt a deflective and evasive approach, centred on a culture of willful blindness, for far too long. This serves no one well - not the patients or their families. It works against the development of a more equitable society, increased costs for mental health and it does not abide with the principles of open government. Can we agree here today that we will meet again in six months, with a clearly defined pathway to achieve patient-centric Irish guidelines for Lyme disease and co-infections building on all available best practice? We wish the committee well in its work today. I will hand over to Anthony in case he wishes to add anything.

Mr. Anthony Morris

It is estimated 1.3 billion people in the world have a disability, or 16% of its population, and 70% of those people have an invisible disease. I am one of those people. You could look at me today and think, “There is nothing wrong with this guy”. I played football for Kerry. I captained my county and played at every grade. I have a first class honours degree and masters as a civil engineer. One month after graduating, a virus attacked the wall of my heart and started my story with Lyme disease. I was misdiagnosed for nine years. I have seen every specialist to do with the human body. You knock on one door and a doctor only deals with one thing and knock on another and that person only deals with something else. Then you go back to your GP. However, nobody is taking an aerial view and asking why is this 32 year old man falling off a cliff? I have a 17 year old daughter who has never seen me well. I have not slept a night in 17 years. I am in chronic pain all day, every day. I barely made it here today. I am awake since 1 a.m. It was 50:50 whether I would make it here today but I promised this woman beside me I would be here.

A few things have jumped out here today. People are thanking us for coming. We are not saying who is the worst disability here. We are not fighting over that. There is a big cost to everyone here. It is not just that we are off work and it is not financial. I will be bedridden for three or four days. Someone will have to feed me with a spoon tomorrow or the day after. I will not be able to shower.

I will not be able to find my way around; I will be staggering. If my partner and I are out and about, I will ask how to get here or there and she will guide me. If I did not have free travel, I would not see my daughter. She lives in Kildare. That was one of the consequences. It was so brutal and harrowing, the relationship broke up. I had to sell my family home to get lifesaving treatment in Washington D.C. By the time I went there, I was in a wheelchair and could not walk or talk.

I wrote these notes today. I am incredibly proud to be here before the committee. I have to wear glasses. Sometimes I cannot even see my food. I will not be able to read the notes or put them together. It is quite emotional. We are all terrified to speak out. Many people here have a lot to offer. I do not know any of these people. It is my first time ever being here. It is difficult for committee members to be sitting there. As an engineer, I could see things from the contractor's point of view and the client's point of view and try to get the best outcome. Being exceptionally fit and strong, I thought I would live forever. All of a sudden, I was bed-bound for nine years and had to go to America to save my life. How can members have an appreciation of what it is like for us?

We had lunch outside. The lady alongside me is visually impaired and could not see the sandwiches in front of her. We are talking about trying to make change, but that happened just outside the door. We are supposed to be listening to and helping each other. We can say we spoke to these people and they did nothing but you are only as good as the people that are feeding you. There are people here who might not be alive in a couple of months' time. I have an incurable disease now, because of neglect. My consultant in Washington D.C. said I would be better off if I had AIDS or cancer because he could have cured them at the time. Remission is my best target now. We are constantly coming up against poverty, wearing comfortable clothes, being in bed and trying to stay warm. We use food vouchers to feed ourselves. When people see us out and about, that is a good day. They do not see us when we are really sick at home.

I wrote down a few things about culture, accountability, attitude and engagement with the experts who are here. I will not name names but one person said after hearing the discussion: "I'm afraid to say what I'm going to say because I'm going to get in trouble with the HSE." If I was on the members' side, I would bellow to get the HSE into trouble.

We go knocking on doors looking for help. We go to people who have a duty of care to us. Kathy has a sick child. All these people have a duty of care. None of us wanted to be sick. I did not sign up to have Lyme disease and be sick and curtailed for the rest of my life. When we look for help, we knock on the door and, bang, we are told: "You are not that sick. Shake yourself off. Get back to work." The stuff that is going on is crazy. You cannot be sick enough to get a disabled badge or an arm or a leg. Holy Jesus. We are in one of the richest countries in the world.

That is it. I wish members well.

An Cathaoirleach

Far be it from me, a humble Corkman who lives four miles from the Kerry border, to silence any Kerryman. I thank Mr. Morris for his contribution.

Mr. Anthony Morris

It is very emotional for me.

An Cathaoirleach

It is, absolutely. It is individuals' lives and those of their families and communities. That is very evident.

Ms Kerry Lawless

I am here as a self-advocate. I also have Lyme disease. It was Lyme disease that upturned my life in 2007. By 2009, I had been forced to take redundancy on medical grounds. At that time, I was the research manager in the National Adult Literacy Agency, NALA, a position which was equivalent to that of assistant principal officer.

I was earning €70,000 at the time and managing a budget of over €500,000 with 14 staff. It had taken me approximately 20 years to work up to that position. I was an early school leaver because I have dyslexia and a number of other disabilities on the spectrum that I was born with, as well as a couple of other quirks that were diagnosed later in life, so physical disabilities as well. However, Lyme disease came along and sort of knocked me on my ass, as Anthony described. Any of the genetic quirks or disabilities I was born with, I coped with, even being an early school leaver and growing up in poverty as the daughter of a lone parent, as well as the other things a lot of us around the table went through as children growing up in the 1960s and 1970s. Things that are diagnosed more readily now, as imperfect as it is, were not caught in the 1960s and 1970s, certainly not if you were a girl. It is hard enough to get them caught now.

I coped, however. I had strategies. I did things that I now know were masking. I did things that made me better at stuff than other people. I also burnt out. It took me a while to learn that. I got by, however. I came from the type of family that just got on with things. I just got on with things and I drove. I came from a family who were politically active. You looked for solutions all the time and sought to make things better. That included the world around you and it included your life. So what if you left school at 16 because you had dyslexia and nobody noticed that you were bright and that you did not do well in exams because you did not like school? I found ways around it and got on with other things. I got involved in my community and with politics. I found a roundabout way and eventually went back to school. I ended up doing a master's degree and getting a first, because mature students rock. I got a master's without having a primary degree because I found the loophole and got in. I was one of those annoying people who sit at the front of the class and annoy all the other students.

I did that, but I burnt myself out and these small physical issues came up, which is what happens to people who are on the spectrum and have chronic migraine and these other health issues. When something like Lyme disease comes along, you are already stretched thin. It comes along - that small little tick bite - and knocks you on your ass and nobody knows what it is. I got tested here - I have an exceptional GP - and the test came back negative, like nearly 50% of the tests here do. They sent me to Beaumont Hospital and they thought I had HIV-AIDS because nothing else would account for how sick I was and why nothing was going to get me better. This went on for two years and they could not work out what it was. I kept turning up and going into work because that is what I am; I am stubborn. You drag yourself into work and no one can explain why you are so ill. You get this series of diagnoses and conditions and on you go.

Eventually, I had to give up the really good job I worked for 20 years to get and found myself on social welfare. Now, I had been on social welfare before - my mother raised me on social welfare and by cleaning houses - and that was fine; I could manage it. Eventually, however, after ten years on social welfare, as other people around the table know, there are no resources and no savings and you cannot manage it. The house I bought was falling apart and there was no more money.

I wish to talk a bit about what we are talking about, that is, this idea of intersectionality when people have a number of quite complex disabilities and a number of long-term chronic illnesses and are not going to get better. They are going to work really hard to try to get some sort of remission and to keep themselves as well as they can but they are only getting older. In the case of a person who identifies as female, she will go through menopause and that is going to knock her for six as well. That will make it harder to stay well and keep her health up.

These people have been on social welfare quite a long time now. We know, from research in a report from 2020 that disabled people have €8,000 to €13,000 worth of additional expenses every year, year on year, than does the average person. It costs us €8,000 to €13,000 each year, year on year, to live.

As other speakers have said today, the medical card does not cover all of one's medication, even if it is prescribed. The medical card and one's PRSI contributions also do not cover the full costs of one's glasses, even if they are prescribed. The medical card does not cover orthopaedics even if you are referred by a rheumatologist and even if you have a medical card and qualify for orthopaedics and every sort of community support. As for the idea of social capital. I came from a political background. I worked in community development and have worked for SIPTU, the National Women's Council and the National Adult Literacy Agency, NALA, at various stages and therefore, I know my way around the different services. I know how to fill in the forms, even though I am dyslexic. I know how to apply to the different funding bodies. I knew how to qualify for every piece of funding at every different agency. It still is not enough because your medical card does not cover all the expenses. People do not qualify for this or for that. In every story people are telling members about, the gaps grow and their income is not enough, just as other people have said.

One other thing that people around the table probably are aware of is the funding available for house repairs and adaptations that is provided through each local authority. In 2018, I needed house repairs and adaptions made. I had a report from the occupational therapist and I still had some savings left. I made an application and I got provisionally approved. I knew I was going to get the top amount, which is 95% of an award. To go forward, I needed an report from an architect, which is an upfront cost. That upfront cost is not covered and it is not something that can be claimed back. It is something that you have to fund yourself and it cannot be claimed back. People who depend on social welfare are being told that this is something they must fund themselves and that it cannot be funded back.

Some of the building costs, such as the VAT, are also not covered and people must cover that themselves. People are then told they can claim it back from Revenue but when people's income comes from social welfare, they cannot claim the VAT back because if even if they are on something like the invalidity pension rather than the disability allowance, their income is not high enough to be in the taxation system. Consequently, you must fund that VAT cost yourself.

Obviously, the amount that is available within the repairs and the adaptation is capped.

I had gone through this process. I paid for a technician's drawing rather than one from an architect because that was all I could afford at the time. I got the initial approval. I had done this, but between the additional costs, the VAT not being covered and the builders' quotes coming in much higher, I could not afford to go ahead. I was asked to talk about question No. 3, how we can ensure equal access and human dignity in public services. There we have a source of funding and grants. In 2018, on paper, did I have equal access to that grant? I could apply for it like anyone else. I was disabled and had access to the occupational therapist through community services. I got my occupational therapist report and was initially been told I qualified for 95% of the award, but I could not afford to go any further and there was no recognition and no provision. Because of my income and status as a disabled person, I did not have equal access to that because there was a presumption it was a level playing field. I will be two more minutes.

An Cathaoirleach

Unfortunately, we asked people to keep their contributions to five minutes. We have a session immediately after this one and we have to be fair to everybody.

Ms Kerry Lawless

Sure.

An Cathaoirleach

I have allowed considerable latitude.

Ms Kerry Lawless

That is no problem.

An Cathaoirleach

We have to be fair to people who have spent the day waiting for their time. I thank Ms Lawless very much. It is difficult for me to stop people mid-stream when they are putting a genuine and serious case, but we have to try to be fair. I call Mr. Harris.

Mr. Adam Harris

I thank the Chair and members for the opportunity to speak to them on this important topic. My name is Adam Harris. I am autistic and I am the founder and CEO of AsIAm, Ireland's autism charity. I am joined by our senior policy officer, Adrian Carroll.

Our organisation is celebrating ten years of activism this month and our vision is an Ireland in which every autistic person is accepted as they are, that is, equal, valued and respected. We place lived experience at the heart of everything we do, both in terms of the supports we provide to our community, the advocacy we conduct and our efforts to support communities, organisations and individuals to take steps to address the pervasive but often invisible barriers which prevent the, at least, one in 27 people in Ireland who are autistic from enjoying the same chance. We welcome participating in today’s discussion during World Autism Month, which provides an important opportunity for our organisation to centre the voice of our community and highlight the human rights issues that confront our community every day of every month of every year. It is also a pleasure to participate in this discussion on the importance of self-advocacy and the role of DPOs as a proud member of the DPO Network.

Ensuring access and dignity to public services is of critical importance to our community. It is also a right autistic people are told we already have. That said, the lived experience of our community on the ground tells a very different story. Just last week, AsIAm published our Same Chance Report 2023, which documents the experiences of some 1,700 autistic people in Ireland across the life cycle. The report also captures public attitudes to autistic people through a poll of a representative sample of 1,000 Irish adults. The data presented captures clearly that in interacting with public services across government, autistic people face barriers not experienced by others. Key findings included: 53% of those represented had to access their assessment privately; 60% were on waiting lists to access a basic range of supports; 71% do not believe, based on their experiences, that our healthcare system is inclusive of and accessible to our community; and 66% of those in receipt of social welfare payments said the current rates were not enough to meet their needs, with 74% incurring additional costs due to being autistic. While a majority felt the education system was not inclusive of autistic people, one in four reported not having access to a suitable school place that meets their needs, with 29% reporting their child had been placed on a reduced timetable without their consent.

Against this backdrop, it is not difficult to understand why 90% did not believe they had the same chance as non-autistic people in Irish society, with 73% feeling that there were treated differently in a negative way and 83% feeling they had to change who they are in order to receive the same chance in day-to-day activities in Irish society.

Autistic people in Ireland clearly do not enjoy the same chance. What can be done to address this? It is notable that our community identified a lack of access to supports and services and the judgment and attitude of others as the two greatest barriers to inclusion in the community. In many respects, these barriers are intertwined with the judgment and attitudes of our society, informing the availability, quality and culture of the services, or lack thereof, available to our community.

The UNCRPD provides a clear framework in which both environmental and attitudinal barriers can be addressed to ensure access and dignity in public services. In the time available to me, I would like to bring to the committee's attention some concrete steps that must be taken to ensure this reality on the ground. One such step entails rights, not grace and favour. As long as our public services continue to operate based on a grace-and-favour approach, our community will not have parity of access to public services. It is critical that the optional protocol to the UNCRPD be ratified during the lifetime of this Oireachtas and that existing disability legislation be reviewed, updated and fully commenced. This includes ensuring that the Disability Act is compliant with the UNCRPD and provides a right to supports and services, not just a right to timely assessment, a right that is presently breached daily across Ireland. Additionally, the EPSEN Act review must lead to legislation that, when implemented, will ensure every child has the right to access an education that meets his or her needs in a school in their local community.

Another step involves hearing our voice. We must live true not only to the adage "Nothing about us without us" but also to the even simpler principle of "Nothing without us". For far too long, the voices of disabled people have been absent from public decision-making processes, including but not limited to disability issues themselves. A very recent example of this was significant changes to the SET allocation model in schools, which was implemented following extensive consultation with trade unions and management bodies but without a single consultation with DPOs or disability groups.

Hearing our voice means much more than simply box-ticking "listening exercises"; it means effectively resourcing DPOs and supporting the development of self-advocacy.

Next is disaggregated data and effective planning. To ensure dignity and access to public services, you need to have access to data to inform the planning of such services and to measure the access and experience of minority groups on the ground. Ireland fails consistently in this regard, and the lack of data on autism, which is not even adequately addressed in the census question on disability, makes our community invisible in policy formulation, accessing public services and vindicating our rights to an equitable experience.

For the entire history of the disabled community, stereotypes, ableism and a deficit-based approach have created barriers to accessing public services and undermined the dignity of our community. We must see the roll-out of neuroaffirmative training, appropriate to role and context, to every public servant in the community. Furthermore, we must not see equality of access as the permission to enter but the opportunity to have the same experience. It is a shameful reality that autistic and disabled people experience discrimination in accessing public services, whether it is mental health services, which structurally discriminate against autistic people, or in our education system, where approaches rooted in behaviourism continue to discriminate. We must see proactive regulation to ensure consistent quality and safeguards so the dignity of autistic and disabled people is guaranteed and protected by independent investigatory and compliance mechanisms.

Fundamentally, it is possible to ensure dignified, equitable access to public services only where investment is seen through the rights lens and not as crumbs from the table or something to be praised and lauded. Our community deserves the same chance, and the investment to achieve that, whether through accessible public transport or public buildings or access to the healthcare system, must be seen as non-negotiable, not an optional extra. I thank the committee.

An Cathaoirleach

On behalf of the committee, I ask Senator O'Loughlin to address some of the points raised by our witnesses over the past hour or so.

Senator Fiona O'Loughlin

I find myself in the humbling position of having to try to respond to the issues the witnesses have all raised. I say this in a very genuine way with a view to responding to their bravery and courage in sharing how their lives have been impacted. They have dealt with very adversarial situations in their lives and how their lives have been altered in terms of everything from employment to family life. It is important that we listen and try to understand.

I do not have any of those issues but, following a bad car accident, I could not walk for a year and had to move back to my parents' house. My mother had to wash me. It took me a year to walk again. I had numerous surgeries. Three times per week, my mum or dad or one of my brothers had to drive me to the hospital, which was 25 miles away, for different medical examinations and physiotherapy. I had three or four stays in hospital. I understand to a small degree what it is like to live your life dependent on other people, not being able to drive, needing to have somebody bring you some place and prepare everything for you. After approximately ten months I was able to manage on a pair of crutches but then there was the whole experience of your arms being needed for the crutches all of the time and only one foot being able to touch the ground. On a very small level, this has brought back some of that from my end.

I thank all of the witnesses - Mr. Young, Mr. Kelly, Mr. Digan, Ms O'Keeffe, Mr. Fitzsimons, Mr. Kent, Mr. Mac Aogáin, Ms Forde, Mr. Morris, Ms Lawless and Mr. Harris. They gave us a really good picture of how we need to improve equality of access and of the lack of human dignity in public services at the moment. I congratulate Mr. Young on his Irish citizenship. We are pleased to have him. He made a strong case for the importance of parents advocating for their children. I will not say that a young person facing adversity in life who is in a family that can advocate for them has won the lotto, but it is a big thing. Unfortunately, there are families that cannot advocate for their children, for different reasons, and those children are left so far behind. It is difficult enough for people who have a warm and supportive family that can do all of that for them.

Mr. Young is right. It is shameful that we are the only country in the EU that will provide only one prosthesis. That is wrong and it is something the committee needs to reflect on in making its recommendations. I am speaking on behalf of all members of the committee and I know every one of us will absolutely be pushing that as hard as we can. Mr. Kelly and Ms O'Keeffe also touched on the need for amputees to have prosthetics that allow them to play a full part in all of their lives, in community and society and in sporting clubs. I congratulate Mr. Kelly, who has represented Ireland no fewer than six times as a player on the amputee football team. It is wrong that he is competing against people from other countries who have the full support of the health systems in their countries to have different limbs for playing sport. It is wrong that the HSE and the Government do not collect figures about amputees. We need to have proper data when we are trying to provide services for those who need them. Looking for a register also has to be one of our recommendations.

The school situation was also touched on. Mr. Kelly talked about his difficulties within the school system, when schools do not have wheelchairs or crutches when you are in trouble with your limb. That is also wrong, and there is intersectionality there with education. I am also a member of the education committee and will raise the matter at that level. We need to have those supports available.

The need for a simplification of the red tape around prosthetics is very clear from what all of our guests have said. It takes so long to get through the system and that is wrong. It needs to be addressed and we will do our best to do something about it.

Jamie spoke about the primary medical certificate and the importance of the scheme. Indeed, a number of our guests spoke about it. It was cringe-making to hear how difficult it is for those who need to get a primary medical certificate to avail of tax relief in order to be able to go about their daily lives, in as much as they can anyway, without the adversity that they have. The certificate and the issue of prosthetics are the two main areas that I hope this committee concentrates on arising from this session.

Michael is right about adhering to the FREDA principles and trying to ensure that everybody who deals with people with disabilities has those values. Everyone within the HSE should be an ambassador for trying to build a better Ireland to ensure that there is equality and equity of access for all of those who need it and that people are treated with dignity. It is very difficult when people have to keep on asking and asking on their own behalf or on behalf of a family member. I have a younger brother with an intellectual disability so I have some understanding of that.

It is important in these sessions that we speak about invisible disability and Kathy, Anthony and Kerry brought that very much to the fore. They spoke about how much their lives have been compromised

by the disability they have because of Lyme disease. Obviously, there are also other diseases and conditions whereby a person looks very well and appears to be well capable of living a full life. It was very interesting to hear how much our guests' lives have changed and it is clear that we need to do far more. They were right to raise the Indecon cost of disability report. It is important that we keep raising that where we can because there is no doubt about that impact.

Finally, this is a very exciting week for Adam and his family. We wish him and his family, particularly his brother Simon, all the best. We have no doubt that Adam will be doing his best to bring his influence to bear in the context of all of these different issues. I thank him for sharing the Same Chance report with us and for talking about the barriers that exist. He mentioned reduced timetables and said that many children with autism are on such timetables, which really shocks me because legislation was brought through this House and through the education committee, of which I was Chair at the time, which bans reduced timetables. We had many different hearings, in which Adam was involved, to discuss the need to ensure that young people with additional and extra needs who are vulnerable would not have reduced timetables in school, except in absolutely exceptional circumstances, and in such circumstances, their parents would have to give permission. Adam is telling us that this is not happening, which is

very concerning. I will bring it back to the education committee.

I thank all of our guests for baring their souls. I wish Jane the very best with her diagnosis. She is extra brave and special for being here today.

An Cathaoirleach

I also wish Jane the very best. We will suspend for a few minutes before we go into our fourth session.

Sitting suspended at 3.39 p.m. and resumed at 3.44 p.m.

An Cathaoirleach

We will now move onto the final question of the day, which is how we can create meaningful independent living and help communities to be inclusive. It is a question that is fundamental to all that has been discussed during the day. Will Ms Aprille Lane, who is online, give her first contribution?

Ms Aprille Lane

I thank everyone for inviting me to speak today. I am a full-time wheelchair user due to multiple sclerosis, MS. I am a self advocate with lived experience and have been living with MS since 2008. One of my main issues for independent living is housing. I always say I am a wheelchair user living in a non-wheelchair-friendly world. I am living in rented accommodation with my husband and six-year-old child, and I am worried that there is no support for me to be able to live in my home. It is impossible to get wheelchair-accessible accommodation to rent and I find I am extremely lucky to have a bungalow, at the very least, to live in. My husband has been working nights for the past ten years to be able to support us all as a family, but this means I have not been able to meet any housing criteria as his income is over the threshold. We are also not in a position to build a house which would meet my needs.

I had not fully realised how bad the struggle was until we went on our first ever family holiday to Center Parcs where we stayed in wheelchair-accessible accommodation for four nights. I cried at the shock of how easy it was to live there. I could now do the simple everyday things with ease. I could confidently and independently prepare food, make the tea, use the bathroom and shower, open and close doors and switch all lights on and off. I could do all of this with such ease. But then it was back to life in the real world where I realised even more how bad my struggles were on a day-to-day basis. The solutions to my housing needs are out of my hands, so the best I can do today is to explain to all here how I am feeling and what I am going through.

My next point is to talk about how dangerous and inaccessible the footpaths are in my hometown. I do not feel safe using the footpaths and I have on many occasions had to use the road instead to get where I needed to go. Only last week I almost fell from my chair because of a dip that was on the footpath for drainage or some such purpose. I also cannot understand why there is no flat surface to get onto the footpath when you park up your car. I feel like I am invisible and I would like to be included in any discussions on a local basis to fix any of these issues around the town.

A further point is that I feel excluded from so many social events for the simple reason of not having any accessible toilets to use. Most restaurants, bars, hotels and banks, etc., do not even meet these simple needs. My answer to most invitations to any gatherings is "No". I am from a large town and I feel I cannot get involved in most things in the community because of the toilet situation. It is a simple thing that people take for granted but it is such a massive thing in my world.

That is it for today. I could go on and on but I will just leave it at that and I thank the Cathaoirleach and all the committee members.

An Cathaoirleach

I thank Ms Lane very much and we appreciate her contribution. The next two speakers are Gary McCabe and Ellen Gavin who are from the Tullamore Inclusion Ireland Midlands Conversation Group. I call Ms Gavin to speak first.

Ms Ellen Gavin

I am from Ballycumber in County Offaly. My friend, Gary McCabe, is from Clara, also in County Offaly. We are glad to be here today. We are members of the Inclusion Ireland Midlands Conversation Group. We are here today together with three other members: Kellie, Darren and Rita.

I will tell the committee about our advocacy group and Gary will tell the committee about the work we do in creating independent living and work in our communities to be inclusive. I will then tell the committee what our group is doing in the community.

We have met as a self-advocacy group since 2018, the same year as Ireland approved the United Nations Convention on the Rights of Persons with Disabilities.

The UNCRPD is discussed at every one of our monthly meetings. We are learning how our human rights are protected, how to use our voices to speak out and how to work locally and nationally with the Government. We use a one-page chart on the articles to discuss how our rights are supported by the UNCRPD. We use the stories of our own lives to discuss how our rights are protected in the UNCRPD. We have learned that our role as self-advocates is protected under the UNCRPD. Personally, as an advocate, I have learned how to speak out. I am a shy person, but in speaking out I can help myself and others to learn more about our rights. Now, I would like to hand over to my friend, Gary.

Mr. Gary McCabe

I thank Ellen. I will tell you about why the UNCRPD is important to us, the work we do in creating independent living and our work in our communities to be inclusive. Groups and organisations ask to hear our voices and our choices. To name a few of our recent focus groups, we have worked with the Health Information and Quality Authority, HIQA, on easy access to its website and with the Irish Banking Culture Board on financial inclusion. We also raise issues in the midlands conversation group. We have invited local county councillors to speak about these issues too. For example, one councillor came to a meeting to speak about housing in Offaly. One of our members is on the housing disability steering group.

We have led public sector duty training in Citizens Information Service offices. We are involved each year in “Make Way Day” to work on accessibility in our towns.

That is with another organisation called Offaly Disability Equality Network, ODEN, and we have a "Make Way Day" every month on Fridays. We have presented to Offaly County Council on disability awareness. We have worked with ODEN, a cross-disability group, and the youth council on disability awareness projects.

We have invited the community to join us for a meeting every year where we present on the CRPD. We ask people to pick the top three rights and then have a conversation about our choices.

To live independently we believe that the top issues are: providing for the therapy needs of disabled children; employment supports; availability of transport; access to housing; access to healthcare; personal assistant support to live our lives in the community; personalised budgets; and easy to read information. I thank the committee for its co-operation and for inviting us to this lovely place. We were delighted to be picked and, "Let's go, Government."

An Cathaoirleach

Well done. I thank Mr. McCabe. Now we will go to Ms McCarthy.

Ms Claire McCarthy

We thank the committee for its invitation to discuss how we can create independent living and help communities to be inclusive. We, Bríd Broderick, Bart Cronin, Diarmuid O’Leary and I, Claire McCarthy, are students on the certificate in disability inclusive practice, CDIP, a one-year course for people with intellectual disabilities, ID, in UCC.

The CDIP is part of the id+ Project which promotes the rights of people with ID to attend inclusive third level education and to go into paid work. The id+ Project values are based on the UNCRPD.

The CDIP is where we learned about the UNCRPD and what it means for our lives. We have become aware and gained leadership skills and self-confidence. Lived experience is important in making laws and policies because people with disabilities have lived in the situations and know what needs to be changed.

The CRPD shows us what could be done for the rights of people with disabilities but there are gaps, and we need to fix the gaps, so we have the right to live independently and be included in our communities.

Article 19 deals with housing and being able to live independently in our own apartment or space is really important. There is a lack of housing and too much red tape to apply. It needs to be more accessible for people with ID to apply for social housing. The form needs to be in easy read format.

It is very important to be included in the community and to have groups to socialise with and be with in community spaces. It is very important to us not to be sidelined because of disability. People with ID should get the opportunity to go on work placements to the community to share their lived experiences and to train staff and be staff.

Being UCC students has been positive because we are integrating with other students and getting involved in classes that we are interested in. People with disabilities have the right to fully inclusive education and not to be sent to special education but policy needs to change for this to happen. There are still the issues of transport and grants for further education, especially for people with intellectual disability, ID. The graduates of last year's CDIP wrote about this in a book chapter.

It is important that the commitment in Article 27 in respect of getting a job is fulfilled. People need to be able to work and earn enough money so they do not have to worry about payments such as disability allowance and back-to-work schemes being cut. We need equality within the workforce. We need to be included in what is happening and to be supported to work. We did a three-month supported and paid work placement in UCC last year. We would like other colleges to look at this to get people with ID into employment and for employers to engage with colleges to know that people with ID can work.

The whole UNCRPD, including Articles 5, 8, 9, 12, 23 and 30, is important. We would be happy to meet and talk more about the UNCRPD. We want to close the gaps between the ideas in the UNCRPD and what is happening in our lives now.

Mr. Derek Gore

I thank the committee for having us today. My colleague Ms Jean Hall will have something to say shortly after I have spoken. We are part of a localised, grassroots advocacy group named the Ballyfermot Chapelizod Disability Action Collective. The group came out of the social inclusion and community activation programme, SICAP, and local partnerships that identified a disabled lady, a former member of our committee. Representatives of the groups got in touch with her to see how she would approach creating more inclusivity in the local area. It was proactive to seek out the professionals in the area of disability, namely, people such as that disabled lady. I was doing a degree in community and youth work in Maynooth University at the time I met that lady. She nabbed me as soon as she knew what I was studying in Maynooth. That was in 2017. I explained that I would not give her much of my time, but here I am, seven years later, in front of the committee. I am proud and thankful to be here.

How we conduct our advocacy is through performance art. We use alternative education through the theatre of the oppressed. We perform pieces of theatre using the lived experience of disabled people and engage the audience within that piece of theatre to give them close to a first-hand experience of what it would feel like to have a disability in any given circumstance. We do it strategically, in that we invite all of the community stakeholders and anyone of note within the community to attend and take part, thereby putting the onus on them to take note and listen up when we make suggestions for change because they have that first-hand, lived experience.

We also run public events. We are due to hold a human rights night in Ballyfermot on 23 April. That event is to go alongside a report we have done in respect of the UNCRPD from a lived, local experience. We are hoping to submit that report to the UN in order that it has a first-hand account of a localised, lived experience of disability.

Through our advocacy and the interactions we have with other disabled people in the community, their parents and carers, we get feedback on many of the issues for people. One of the continuing issues is the amount of time it takes for services to be provided, whether that is access to their homes or alternative medical aids, such as electric beds, wheelchairs, etc. There are delays in getting those supports. For example, one member of our board was waiting for six months for a simple ramp to allow for access to her door. She could not leave the house without assistance from one of her family members and because the ramp was not there to get her in and out of the house, she could not get a mobility scooter.

I was 18 years of age when I ended up in a wheelchair.

I had an incomplete severance, which is basically a severed spinal cord. I will never walk again. I was in Dún Laoghaire for six months. On leaving, I was told that it would be two to three years before my house could be adapted. I was told I would have to have my bed, toiletries and all other amenities because I was going to be on a bed at home for three years. I am thankful that I had someone to advocate on my behalf at that stage and who was able to achieve all of that within 12 months rather than three years. That highlights the importance of people knowing what they need to know and of people advocating on another's behalf having a proper understanding of what to advocate for.

My biggest personal gripe is that my disability never really affects me unless it is pushed in my face. I am a father and will be 40 years old this year. We all get more impairments and physical wear and tear from age but also from physical exertion, such as using a wheelchair, which is particularly hard on the shoulders. I have invested €5,000 of my own money in a wheelchair-adapted handcycle. There is no grant from the Government for that. You can claim a small bit back on your tax, but, if you are on a disability payment, you cannot claim the tax back. I have a bike that cost me €5,800. I got it so that I could partake in leisure activities with my young children. We love cycling. We love getting out. I get out as much as I can. I try to be as proactive and healthy as possible. A big part of that is getting out into the local parks, being part of the community and bringing my children to football. An obstacle for me is that, while I can get through on the wheelchair, I cannot get through the kissing gate on my wheelchair-adapted bike. There was a time when I went to go for a cycle in the park with my kids after purchasing this bike but, to get to the park, I had to go through another park that had kissing gates. When we got to that park, I had to go home. My two young children, who do not have disabilities, became disabled because of a barrier within society. It really affects me as a disabled person when somebody who does not have a disability becomes disabled because of my disability. These are just simple little things from my local lived experience. I am sure lots of people have experienced this because there are such gates in basically every park in Dublin. They were initially put in to address the misuse of scramblers but they are not fit for purpose.

Other things have come up. People have mentioned many of them. I will not repeat them, but that is basically what we do as a service in Ballyfermot. Ms Hall will have her say now.

Ms Jean Hall

Along with being a member of the disability action collective, I am a member of a drama group, Smashing Barriers, that brings our message and awareness to the local community of Ballyfermot and Chapelizod. It has helped me be aware of other people with other disabilities. I am a blind woman living in Chapelizod. As I was saying to Mr. Gore earlier, anyone looking at me who did not see a white cane in my hand would think I was fully sighted but a little clumsy. I was born fully sighted. My sight started going when I was in my teens. It got worse when I was in my middle 30s and right up until I was in my 40s. I am a registered blind person and find that, because there is not a good bus service from Chapelizod to Ballyfermot, I am prevented from becoming involved in the community. If I am not sure a bus is going to turn up, I use the local taxi service, which eats into my income. There should be a more regular service or a grant or mobility allowance to give those who need to use taxis some way of doing so without being left out of pocket or having to use all of their income to support other activities and be part of the local community. I find that a difficulty. It would put me off going out, although it has not as yet. I am prepared to work and find out whether there are more suitable buses to use.

An Cathaoirleach

I thank the witnesses very much for their evidence regarding their personal lived experience. I will now call on Senator Clonan to respond on behalf of the committee.

Senator Tom Clonan

I thank everybody for coming. I know there are significant challenges for people attending today, as we have heard from many of the witnesses. I know that at gatherings like this, disabled citizens are often the only people in the room who are not in receipt of supports, allowances or assistance to attend. I really appreciate, therefore, the fact they are here. I am only sorry we are not meeting in the Seanad Chamber.

Listening to the contributions, a couple of recurrent themes jumped out at me. The principal one, from everybody who has spoken, relates to rights. As a community, if we are to address all the issues that have been raised, we have to have a fundamental and radical shift towards a human rights-based approach to vindicate the inalienable human rights of disabled citizens. I wrote down some of the words people used, such as the grace-and-favour approach or being done a favour. People are exhausted from self-advocacy and the burnout associated with that. Last month, more than 1.2 million Irish people voted against a wording, in the care referendum, that would have denied us independent supports to live in the community and to participate fully in the artistic, cultural, economic and social life of this Republic. Over 1 million Irish people voted that down, in the strongest ever rejection of a referendum proposal in the history of the State. I hope the Government really listens to what the people have said, because it has also emerged the Government received advice that was designed to deny our community legal recourse to their socioeconomic rights. That is a mindset that has to change. We are all on the same page here in regard to the need for our rights to be fully vindicated, but some people in society who hold very influential positions need to amend their way of thinking.

Another recurring theme was that it cannot all just be sympathetic words, such as being told you are inspirational, brave or full of courage. That is not enough. There has to be action, and the people who can carry out those actions are the people who are in power. I take great encouragement from the fact the Minister, Deputy Harris, who is rumoured to be about to become Taoiseach tomorrow, has given an undertaking that he will ratify all the protocols this year, within the lifetime of the Government, and that is to be commended. It shows that key decision-makers and people in power are listening. The narrative is changing, but we need to keep up the pressure. I ask my colleagues attending this meeting, both those who are in government and those who will probably be in government soon - no pressure, Dessie - to support the disability rights legislation that is being drafted, some of which is on the books. I ask them please to support it and not to interfere with it or amend it to make it meaningless. I ask them to do the right thing, because it is the direction of travel and it is what we need to do to bring ourselves into line with everybody else in the European Union. Even in the poor, benighted UK, our lovely neighbours, under a Tory Government, the citizens of England, Scotland, Wales and Northern Ireland enjoy considerably more rights than we do as disabled citizens and carers. We just need to straighten up and fly right.

I thank Aprille, Gary, Ellen, Claire, Derek and Jean for their contributions, as well as everybody else who is here or was here earlier. The solutions to all the challenges that have been set out reside in rights-based legislation, and Ireland is an outlier in that regard. The people who can do it are the people in power, that is, the people who have the power to do the right thing with their votes and to vindicate our collective rights.

I want to conclude by quoting Gary. He is right. "Let's go, Government." Let us do the right thing.

Mr. Gary McCabe

I just want to say that I hope my friend, Leo Varadkar, is listening to this. I met you before. You're the greatest friend ever. Leo, I like you, wish you well, and good luck in your future.

An Cathaoirleach

We go briefly to the three members of the committee who have been here all day. We might offer one minute each to their contribution on it. I know they have been here since early morning.

Deputy Dessie Ellis

I thank everyone who came here today. We have heard from various different people involved in disability services. It is mind-boggling when you listen to all the different areas that have been addressed. We know that about 20% of the population have some form of disability. That is a huge number of people.

I thank Ellen, Jean, Gary, Claire and Derek for their input. A number of things stood out to me. The witnesses were talking about the housing issue and accessibility. We do not have quotas when it comes to new houses for people with disabilities. It is something we have been pushing for. The Government has said it is committed to giving a percentage but it still has not happened. That is something we just have to keep pushing for. We obviously want a rights-based approach to everything. It includes children's rights too. There are children with disabilities. Inclusion Ireland mentioned children. We should not forget their rights. They need to be represented at the table.

I will give an example of a mental health issue. I recently had a situation where a person with schizoaffective disorder, which is a lifelong mental health problem, was sent forms by the Department of Social Protection to reapply for social welfare. I often wonder what planet these people are on. It is a disability for life. It is not something that is going to change.

We heard about amputees. I do not get why we have not sorted out this problem with the primary medical certificate. I just do not see how that does not apply to someone who has lost a limb. It just does not make sense. I know this committee has outlined this on many occasions and is pushing and pushing. It just seems that it is not being taken up. It is very annoying.

There was a mention of kissing gates and different things. There is the issue of scramblers. We eventually brought forward that Bill. It is still not good enough. I have had many complaints from people with disabilities trying to get through the gates. When they are walking in the parks, there are scramblers and bikes flying by them. These things all have to be addressed. It is sometimes quite upsetting when you hear some of the cases that have happened.

This means testing for medical cards is frustrating. I often find that this process is upsetting to people, who have to literally plead their cases and constantly come back to do so. I think there needs to be a better way to do it.

When people move into new homes and get a grant from the welfare officer, there is a maximum of €3,000 for that and it is centralised elsewhere. That needs to be increased significantly. Which people with a disability could fit out an apartment or a house with €3,000? It is just not possible. The flooring alone would cost €2,000.

Those areas all have to be addressed. I do not have all the answers but I will certainly keep trying to push the areas that I see which need to be addressed. A fair number of people at this committee are pushing hard to get these issues addressed.

Senator Erin McGreehan

I thank everyone for coming and spending the day with us in the Oireachtas. When we first had the idea of having this meeting it was very well received by all the members here. It has proven to be exactly what we wanted. We wanted to hear about people's lived experiences. We wanted to be slapped in the face and to be embarrassed about the situation that exists for so many people. That has happened. We did not hear many new things today. It is shameful that over and over again we have to continuously repeat ourselves and the witnesses have to repeat themselves constantly.

Paul Fitzsimons said that he just wants a little bit of humanity to allow people to get on with their lives and not have to fight for everything. People have been let down and people are exhausted. Adam Harris mentioned having the opportunity to have the same experience, not just the same access. I took notes on many things throughout the day. I want to reiterate this committee's commitment to supporting everyone here and to continuing the fight for people with disabilities. There are so many different areas and aspects from transport to housing to healthcare to education where people are being denied basic dignity. We heard the witnesses today and their words fill us and push us on. Go raibh maith agaibh.

Deputy Frankie Feighan

I thank the witnesses for coming here today. We heard their messages on what needs to be done loud and clear. I have been on this committee for a little more than a year. I have been in the Dáil for 22 years and this committee is like none other. We come to listen. Our Chair advocates very strongly in this area. We have brought many Departments and stakeholders together. We have found over the years and on many occasions that committees and Departments can be in their own silos. Our job is to bring them all together to deal with this very serious issue.

We heard the views, opinions and advice of the witnesses. I think that the incoming Taoiseach, Deputy Simon Harris, will establish a committee in the Cabinet to deal with these issues. I have found that if there any blockages, there is nowhere better than the Department of the Taoiseach to deal with them. I heard loud and clear the call to ratify the optional protocol to the UNCRPD. We aim to do so this year. This is a commitment and a step forward. I believe it will be carried out by the end of the year.

Over the years, we have seen various issues with medical cards. Sometimes it is a matter of getting people to work together. That is what the Chair and this committee are doing in a united way. I again thank the witness for their sometimes emotional and often stern advice. We heard the messages loud and clear.

An Cathaoirleach

To conclude, I want to pay particular tribute to our team. They put this together not just over the last six or seven weeks since we started on this but they also worked tirelessly over the weekend, on Friday, Saturday and Sunday, to bring this meeting together today.

We are starting another module with public bodies like Bord Bia and the ESB in relation to the implementation of the UNCRPD. I have listened intently all day. I always sum it up with two words, "cultural" and "attitude". One thing has happened over the last week that has shown me that the culture and the attitude is still embedded in society. You all made an effort to be here today to listen to our members who are an excellent group of people and I am delighted to chair their meetings. We had hoped that this meeting would take place in the Seanad Chamber but a motorised lift malfunctioned there.

Because of that, we could not have citizens of the Irish Republic who are members of the disabled community within the Chamber as we had organised it. I just wonder if that lift would have been fixed if it was Joe Biden who was coming. I think that is crucially important.

When we were speaking privately between the various sessions all day, some of the members told me they are deeply horrified that some of this evidence is being given in April 2024 and that we are still battling to give equal rights to a fifth of the population of this country. No matter how hard we work as a committee, we have to keep hammering home the message. The message is on the primary medical cert. There is not a Member of both Houses who has not tabled an Adjournment debate, a Topical Issue matter or a Commencement matter in either of the Houses on it. We are still banging on about it.

It is vitally important right now that we continue to strive as hard as possible for that one fifth of our population. Whether it is a physical or individual disability, it is a disability that is keeping them from having a fulfilled life. It is about 80 or 90 years since Maslow wrote his theory about the hierarchy of needs, and 80 or 90 years later, we would surely want to have a better society for people. We will continue to advocate for the witnesses, and I would appreciate it if they would keep in contact with us because we are only as strong as the evidence we hear.

Again, I thank one and all, and I also thank everybody who has been associated with organising this event. It has been a very beneficial day, and we hope we can make some change for all of us. The committee is adjourned until Wednesday.

The joint committee adjourned at 4.27 p.m. until 5.30 p.m. on Wednesday, 10 April 2024.