Michael Moynihan (Cork North West, Fianna Fail)
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Apologies have been received from Deputies Phelan and Wynne and Senator Higgins.

The purpose of today's meeting is to discuss the disabled persons organisations, DPOs, and the implementation of the UN Convention on the Rights of Persons with Disabilities, UNCRPD. On behalf of the committee, I extend a céad míle fáilte to Mr. Leo Kavanagh, national secretary of Physical Impairment Ireland, to the representatives from the DPO Network, Ms Jacqui Browne, chair, and Ms Lianne Quigley, and Mr. Robbie Sinnott, co-ordinator with Voice of Vision Impairment, VVI.

I remind members that they can only participate in the meeting if they are physically within the precincts of Leinster House. If members are joining us remotely, they must confirm that they are within the precincts before they can contribute to the meeting. For anyone watching online, some witnesses are accessing the meeting remotely. Due to the unprecedented nature of this, I ask everyone to bear with us should technical difficulties arise.

I must advise everyone participating in these proceedings on matters of privilege. Witnesses are directed that only evidence connected with the subject matter of these proceedings is to be given and are asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against any person, persons or entity by name or in such a way as to make him, her or it identifiable. I advise witnesses giving evidence from locations outside the parliamentary precincts that the constitutional protection afforded to witnesses attending and giving evidence before the committee may not extend to them. No clear guidance can be provided on the extent to which such evidence is covered by absolute privilege of a statutory nature.

Members are reminded of the long-standing parliamentary practice that they should not comment, criticise or make charges against any person or entity outside the Houses by name or in such a way as to make him, her or it identifiable.

I call on Mr. Kavanagh to make his opening remarks.

Mr. Leo Kavanagh:

I thank the committee for allowing me to make my contribution and that of my DPO, Physical Impairment Ireland, PII, to today's meeting on the implementation of the UNCRPD. This opportunity has been a long time coming for me. Therefore, pardon me if I sound a little emotional.

I am the national secretary of PII. I am a 55-year-old citizen of this State with physical impairments and I am from County Laois. PII is a national voluntary DPO founded on Monday, 29 March 2021 by physically disabled people, family members, carers and advocates of persons with physical impairments from a number of different counties. Our DPO is made up of members with differing physical impairments, including people with congenital disabilities like myself, those being, disabilities that exist at birth or shortly thereafter; amputees or persons possibly awaiting amputations due to accidents, illnesses or disability; and wheelchair users, mostly following accidents, illnesses or disability.

In PII's opinion, a DPO is one that is managed, regulated and guided by people with disabilities, our families, carers and advocates. It must be open to everyone in its particular constituency, as required by general comment 7, paragraph 11 of the UNCRPD. The members of PII have agreed that a clear majority of our DPO must have a physical impairment. Following legal opinion sought, DPOs are the only representative organisations in respect of disability matters under general comment 7, paragraph 10 of the UNCRPD, and I would like to remind the committee that DPOs are at the heart of the convention, as per general comment 7, paragraph 1.

One of the main aims of PII is to engage with our Government on the UNCRPD in addressing all human rights issues faced by physically impaired people and their families and carers. Furthermore, one of our objectives is the full implementation of all aspects of the UNCRPD in our State without any further delay. The members of PII see the UNCRPD as an agreement on the human rights of all people with disabilities, but also their families and carers. The Government signed the convention in March 2007. However, it only ratified the convention 11 years later in March 2018. Ireland was the last country in the EU to do so. In doing so, the State has agreed to stick to what it has agreed under the UNCRPD.

A citizen of this State may make an individual complaint to the UN under the UNCRPD's optional protocol. Strangely, our Government decided not to ratify the optional protocol until 2020 when it was due to make its first report to the UN. The State's report was finally published on 10 November 2021, much to the annoyance of many people with disabilities. To rub salt in the wound, the optional protocol has still to be ratified almost four years after the UNCRPD was finally ratified by the Houses of the Oireachtas.

In the opinion of PII, the State must ensure that people with disabilities can access and exercise all the rights listed in the UNCRPD. The Government and public organisations must now work alongside people with disabilities so that we can use transport and access buildings, matters that usually do not concern able-bodied people. They must produce information in a format that people with disabilities can use and understand. The State must ensure that people with disabilities have an adequate standard of living and enough money to live on, especially in the current economic climate. People with disabilities must have the choice of where they live. The Government must organise a register of all DPOs, as required under general comment 7, paragraph 61 of the UNCRPD, in conjunction with people with impairments without any further delay. The State must provide core official funding to all DPOs and offer all possible supports to allow them to develop and flourish. In 2022, DPOs have to be prioritised, distinguished and involved in the design development process as regards all of the State's policies and plans to confirm that they are disability proofed. This must be done solely by people with disabilities, their families or carers. The State must highlight, prioritise and distinguish all DPOs in all consultations related to disability and closely consult with and involve people with disabilities in all processes, as per Article 4.3 and general comment 7, paragraph 13 of the UNCRPD.

Physical Impairment Ireland, the national DPO of which I am proud to call myself a co-founder, met last Monday night, as we have for more than the past year.

My physically impaired friends and colleagues have requested that I respectfully inform this important committee that a person who requires a made-to-measure wheelchair should not have to wait six months for it. People with mobility issues that require an ordinary wheelchair should not have to wait six weeks before receiving one from the HSE. Medical cards should be made available to all people with disabilities and they should not "lose" them if they take up either part-time or full-time employment. Furthermore the difficulties accessing health services and supports for people with physical impairments is becoming a nightmare. The cost of prosthetic limbs has increased by 30% since Brexit and the cost of a silicone sock used by amputees is now about €1,000 in some cases. That equates to five weeks' invalidity pension in this country. Just reflect on that for a few seconds. These silicone socks protect the skin, absorb perspiration from a residual limb, absorb friction, cushion impact, compensate for shrinkage or swelling of the residual limb and provide a way to adjust to fit the socket. These socks are not a fashion statement they are a necessity. The tendering process for mobility aids and supports such as artificial limbs and devices such as wheelchairs must be looked at immediately. Since Brexit the prices of limbs and wheelchairs have skyrocketed and many people with physical impairments cannot afford them. However, they most certainly cannot afford to be without them. Markets for them will have to be sought in mainland Europe.

Our voluntary disabled person organisation, DPO, often discusses the lack of access to employment for people with physical disabilities. In many cases in 2022 our well-educated members still fail interviews due to a visible disability. That is just a fact. When a person with a visible disability asks for feedback as to why they were unsuccessful prospective employers unfortunately still refuse to engage. For many people with physical disabilities there are barriers to participation in political life in this country. There must be sufficient supports for people with physical impairments trying to enter politics. The lack of people with disabilities in both national and local politics is staggering. Perhaps the Government and members of this committee need to start seriously looking at a quota system for people with disabilities to encourage them to enter politics as there is a serious under-representation of people with a living experience of disability in political and decision-making roles in this country. DPOs are too often discounted and at best our expertise in having living experiences as people with disabilities is overlooked. Since 2022, based on the findings of the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD, the committee has the power to make significant change to the lives of more than 250,000 people in this country. I ask members to please use the power bestowed upon them wisely. Go raibh míle maith agaibh go léir.

Michael Moynihan (Cork North West, Fianna Fail)
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I thank Mr. Kavanagh and call Ms Quigley and Ms Browne to make their opening remarks.

Ms Lianne Quigley:

The DPO Network is pleased to be here today. The DPO Network is an alliance of disabled people and their organisations of which we have five in Ireland which have joined together with a common interest in the implementation of the UN Convention on the Rights of Persons with Disabilities in Ireland. The five DPO member organisations of the DPO Network are: AsIAm, Ireland's national autism advocacy organisation; Disabled Women Ireland, DWI; Independent Living Movement Ireland, ILMI; the Irish Deaf Society, IDS; and the National Platform of Self Advocates.

The DPO Network is committed to human rights and a social model of disability which says that exclusion, inequality and discrimination in disabled people's experience is not a consequence of their impairments but a result of the economic, cultural, social and political forces at play in society. All of our work is led and informed by the active participation of disabled people based on their lived experience. Given the broad membership base of the members the network gives a unique space for a genuinely cross-impairment discussion and analysis of the issues faced by disabled people and provides a space for networking between the organisations.

DPOs work from an explicitly human rights and equality approach. Our aim is to build a more inclusive society. We are informed by the social model of disability and, therefore, in all the documentation we use and in our discussions we use the term "disabled people". That represents our values of equality and empowerment which are core to the DPO Network. The term "disabled people" comes specifically from a view from disability advocates as in the social model of disability. The social model of disability looks at how society is structured and how it disables people. It is not based on a person’s impairment. It specifically looks at the barriers that exist in terms of attitudes, policy development, access or lack of access to supports that prevent people from fully participating in society as equals and ensuring they have choice and control over their lives. Within this model it is society that disables people from achieving their hopes and dreams, not the person’s impairment. The social model informs the work of the DPOs and the members of the DPO Network. Central to the way we work is to ensure that policy decisions that will directly affect disabled people's lives must be made in consultation with and influenced by those whose lives they will directly affect. The work of the DPO is to work with policymakers, legislators and statutory bodies to develop policies and campaigns based on disabled people’s lived experiences in order to remove these barriers that restrict the life choices of disabled people. When these barriers are removed disabled people can become independent and equals in society, with choice and control over their lives.

The barriers are not just physical, they also relate to attitudes which we often find in society, based on prejudice or stereotyping, often called disablism. These also disable people from having equal opportunities to be part of society. Disabled people developed the social model of disability because the traditional medical model did not sufficiently explain the lived experience of disability or help to develop more inclusive ways of living within society.

DPOs are civil society organisations of disabled people as distinct and completely separate from disability service providers and charities for "clients" or "service users". Disability service providers, most of whom are funded at least in part by the State, often comprise boards and staff who are non-disabled people. A more detailed discussion about this along with a number of other points related to terminology and definitions are covered in the submission we submitted to the joint committee.

I will now talk about the implementation of the United Nations Convention on the Rights of Persons with Disabilities. It is just four years since Ireland ratified the UNCRPD in 2018. We are now at a very important juncture where leadership must be shown by Government in the implementation of the convention to progressively realise the rights of people with disabilities in Ireland. Implementation of the UNCRPD will require the full and active participation of disabled people in the design, implementation, monitoring and evaluation of policies to promote effective social inclusion through their representative DPOs.

The UNCRPD is not solely about policies and frameworks concerning disabled people's lives. It is about ensuring that disabled people and their needs are given full regard in all aspects of public, cultural, economic, civic and political life in Ireland. Ireland's implementation plan for the UNCRPD needs to be ambitious, robust and outline specific and measurable targets.

A key deliverable, as part of the programme for Government, is the development by the Department of Children, Equality, Disability, Integration and Youth of a plan for the implementation of the UNCRPD. It is important that the Oireachtas Joint Committee on Disability Matters focuses on and promotes the importance of a joined-up collaborative approach between Government and those delivering this implementation. There is also a need for a co-ordinated cross-departmental approach to disability and the implementation of the UNCRPD.

 One crucial aspect of the convention's implementation is the ratification of the optional protocol. The benefit of the optional protocol is that individuals or groups of individuals can make direct complaints against the State to ensure that their rights are being realised under the UNCRPD, and that they can lodge a complaint themselves. The majority of European countries have ratified the optional protocol and Ireland should follow suit.

My colleague, Ms Browne, will continue with our statement.

Ms Jacqui Browne:

I am chair of the DPO network, which comprises five organisations. I will continue on with the remaining items of the agenda that the joint committee is covering today.

First, I will talk about meaningful consultation. In order to achieve meaningful equality, disabled people and our representative organisations must be consulted on all decisions that impact our lives and not just on legislation that specifically focuses on disability. We live a full life and we do not only focus on disability issues.

We believe that consultation processes at all levels of Government and decision-making, including local government, must be accessible and underpinned by the principles of universal design. Accessibility planning must also consider reasonable timelines to allow DPOs to participate fully. We need that time.

There needs to be a robust and continuous forum for engagement with DPOs, both nationally and locally, in order to identify key areas of expertise and input. One weakness that we have found is that too often in society the ideas around what we might be consulted about are decided by others who are mostly non-disabled people. We do not even get a chance to set the agenda around the issues that we want to be consulted about. We need ongoing dialogue where we can raise areas of priority, identify our own areas of expertise and be involved in setting the agenda as much as replying to the agenda. Consultation should result in meaningful engagement. That means that DPOs input must be genuinely taken on board, adopted wherever possible and that clear explanations are provided wherever DPO recommendations cannot be adopted. We also need to ensure there is adequate representation of additionally marginalised groups who are often excluded. For example, people of gender, different backgrounds, ethnic minorities, children, and people with very high level and profound needs in terms of support. We must bring everyone with us at the same time.

The Assisted Decision-Making (Capacity) Act, and the Assisted Decision-Making (Capacity) (Amendment) Bill, are probably the most significant pieces of legislation affecting disabled people's fundamental rights and freedoms currently before the Oireachtas. We are concerned that the joint committee tasked with ensuring Ireland's implementation of the convention is not involved in its review in order to ensure its compliance with the principles and obligations of the convention. We are also very concerned at the implications of the resistance shown to involving DPOs in consultation on the amendment Bill based on the erroneous belief that a focus group consultation, which took place way back in 2013 and before the convention was even ratified, suffices. That is not the case. We have similar concerns regarding adult safeguarding and other future legislation failing to involve DPO expertise from the earliest stages in terms of design and implementation.

In terms of enabling inclusion and participation, it is essential that DPOs are adequately funded and resourced to fulfil our duties. This must include capacity building, funding of accessibility measures, governance support, training development, and access to information needed to influence policy and monitor the implementation of the convention. Attention must also be paid to ensuring that disabled people are not expected to work for free on a voluntary basis and that we do not face negative consequences for engaging in any DPO-related work due to rigid means-testing restrictions on disability-related payments and other similar type supports.

Levels of resourcing and access requirements for DPOs must also be considered when developing frameworks to ensure meaningful consultation. Some DPOs, indeed, members of our DPO network, even on the national level, are not in receipt of any funding whatsoever and rely solely on the volunteer work of disabled people who often have other day jobs. This means we need longer consultation timelines and it is obvious that we do not operate on an equal basis to others around disability issues. For example, should Irish Sign Language interpreters be required for internal consultation most DPOs will have to book them weeks in advance. Therefore, if we are to be truly inclusive we cannot simply decide to have a meeting tonight at 8 o'clock unless we have pre-booked sign language interpreters. It is important that these factors and examples like this are considered well in advance to ensure equal participation for everyone. Similarly, people with intellectual and-or learning disabilities must also be given adequate time, resources and necessary supports to fully understand processes and be enabled to contribute in a meaningful way that respects their needs.

Consultation with DPOs, while useful, is not sufficient for the full realisation of our rights and, indeed, those contained in the UN convention. Disabled people need to have decision-making power, oversight and monitoring of mechanisms and systems designed to implement the convention. This requires continuous engagement with DPOs and developing working practices that are inherently accessible and universally designed from the start.

DPOs and disabled people need to be resourced on a continual basis to participate in such mechanisms. It cannot just be one-off projects and pilots.

The final agenda item the committee asked us to address was around the cultural shift required through awareness-raising and local mechanisms. The network has two points to make here. Awareness-raising campaigns, while very useful, have limited value and so we need to be very careful in how design and develop them and what the purpose of them is. They must be conducted in a way that is accessible, respectful and, most of all, not tokenistic to disabled people. Awareness-raising campaigns have their place but are most effective when they are tied to a particular issue or issues that can be acted upon and result in meaningful change and where the goals of such campaigns are clear, reasonable and achievable for disabled people. Historically, we often had non-disabled people going around towns to check out how accessible they were. That is tokenistic. That is not accessibility auditing. We need to really think through this and the only way you can do so is by working with and talking with disabled people, and involving them in the development of such awareness-raising. Much emphasis is sometimes placed on delivering training and equality awareness around disability issues on the basis it will solve the problem. That is not necessarily so. Any disability awareness training delivered to public and civil servants must be developed in partnership with DPOs and delivered by them. Such awareness-raising is of little use if it continues to perpetuate harmful stereotypes or misinformation.

I have a couple of concluding remarks. I believe members of this committee know we have an opportunity for Ireland to fully realise the implementation of the UNCRPD, including the ratification of the optional protocol. How can this be achieved? It can be achieved by taking action and recognising that now is the time. Now is the time to bring our policies in line with our fellow European countries and adopt internationally-recognised standards. Now is the time to resource and build the capacity of DPOs to support Government and service providers to achieve equality and access for all. Now is the time to finally hear and prioritise the collective voice of disabled people and bring that voice and the value of it to the relevant local, national and international policy spaces.

Michael Moynihan (Cork North West, Fianna Fail)
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I thank Ms Browne. I call on Mr. Sinnott to make his opening statement.

Mr. Robbie Sinnott:

Gabhaim buíochas leis an gCathaoirleach agus leis na comhaltaí as an gcuireadh a bheith anseo. I thank the Chairman and members for the opportunity to present today. I sent in a short statement but given my impairment it is not something I am going to be able to read out loud. All I can say is I will use my notes from my phone and try to riff on the themes.

Voice of Vision Impairment was founded in July 2019 to specifically be a DPO space because we had read in November 2018 of the possibility of there being a DPO. Many of us had been in the activist space prior to this and had achieved some notable victories. However, the idea the UN committee itself and the UNCRPD gave priority status to DPOs over the service providers, allied groups, etc., that had been jumping in and speaking for us all those years, put a duty on us to step into that space. We stepped up to the plate. We fulfilled our part of the bargain. We performed our civic duty to occupy that space not just because we were entitled to but because it is our gift to society to contribute to an equal society. It is not a selfish act. We are a collective. It is collective agency. In VVI we prioritise the experiences of those who are most disabled. I mean those who are least resourced, etc. For want of a better term, many of us use the phrase "lowest common denominator". We are looking at those with the least resources. Very often, those perspectives are lost when you are dealing with individual disabled advocates or dealing service providers, etc. It is about the voices members do not hear at the committee, or at their constituencies or in their constituency meetings in their offices. They are the ones who most need to be listened to and the ones we prioritise.

We have a disadvantage in that most of us have difficulty using social media and so we do not have much of a social media presence, unfortunately. We, therefore, rely mainly on visually-impaired network lists, etc., to spread the word and try to get as many visually-impaired people in the country to join us. You might look at it like a trade union. We are representative in the way a trade union is. People have the opportunity to join, it is open and all visually-impaired people are welcome and their voices are equal. We currently have 13 representatives throughout the country who have read our constitution and formulate our policies, etc. We punch above our weight in that there is much enthusiasm and excellent work done by our representatives who are all completely unpaid because it is all completely voluntary. All our members are blind or partially-sighted. We do it through strategic policy committees representing public participation networks, PPNs, for instance. We are also involved in local authority housing steering groups. It is hard for me to remember all the stuff off the top of my head but by going through each of our representatives I can say something. Last week we had a person join an Economic and Social Research Institute, ESRI, consultative committee for its research on disability. We have people engaged with the HSE on very specialised committees on screening, etc. We are also on disability user groups. We have a very strong presence on public transport providers, etc. This is all done by unpaid representatives. We report back to our representatives as a core and update our members regularly as to what is going on. Everybody has an opportunity to input.

I will move on to my next point. Our core issues are travel and information. By information, I mean that most State documents and even most stuff up on gov.ie are not accessible to visually-impaired people who use screen readers. On travel, we need real input into the absolutely disablist long-term travel plans for most local authorities, which appear to be endorsed by the State. It is more costly if we have to stay at home because it is just too dangerous to step outside. On DPOs and the UNCRPD, Article 4.3, say states parties:".... shall closely consult with and actively involve [disabled people, as that is the term we are using] ... through their representative organizations". That is the key part.

The point is that there is consistency and coherency. One does not have to keep reinventing the wheel or depend on one person's experiences. We can prioritise those who are most disabled or who have the least resources and put it into a framework so that we establish our positions, rather than each Department or committee doing independent research. It is notoriously difficult for companies such as Behaviour & Attitudes or RedC to find blind people. They can only operate through finding a friend of a friend. It is not good enough. There is a chance here for a coherent voice.

As Mr. Kavanagh said earlier, the only representative organisations are DPOs. That is currently in the National Disability Authority's paper on language, as well as the legal opinion, and agreed with by the Irish Human Rights and Equality Commission. The DPOs are key to the implementation of the UN Convention on the Rights of Persons with Disabilities. Article 4.3 is part of general obligations and general comment 7 explains this in paragraph 3. This means that there is no implementation of the UN Convention on the Rights of Persons with Disabilities without the prioritisation of DPOs in consultations. Everything has to begin with co-design through DPOs. They have to be distinguished. One would not put trade unions in the same room as employers unless they are having a dispute, bargaining resolution or something like that. Regarding the idea of ticking a box and putting all disability organisations, DPOs, and service providers in the same group, we often see service providers as being part of the problem.

Accountability is needed. If matters that should be rights are to be outsourced to charities, there at least needs to be proper accountability and transparency. That is a key role that DPOs can and should provide. We do not use "sector" but the disability sector does, because it is an industry. Too often, charities in it are treated as if they are a mix between Luke O'Neill and Mother Teresa, as if saying that they are experts but also that they are very good, too. It is all well-meaning, but the UNCRPD points to a new way.

A clear majority in a DPO has to be disabled people. It has to be led, run and directed by disabled people exclusively, not just by a clear majority. It has to be an organisation that has been set up specifically to defend human rights. It is not just a little bit of the purpose, but the main purpose of the organisation. There is more, which can all be read in general comment 7. Those are the main conditions. DPOs should be distinguished from service providers under paragraph 13. Ireland needs a register of DPOs, which does not exist at present. Many local authorities do not even know what a DPO is, which is due to the lack of leadership shown by the Department of Children, Equality, Disability, Integration and Youth, which is the key Department. It should produce memos to let people know about DPOs and to prioritise them.

DPOs need to be registered. We need core institutional funding, as mentioned by previous speakers, which is also covered in general comment 7. Legislation is required to protect DPOs in several ways. Our oxygen is being sucked up by some service providers, which are setting up would-be DPOs that are really under the control of the service provider. That disempowers disabled people. It is only through DPOs that they are empowered by the UNCRPD. We do not have the resources, given that we have no income, to compete with charities that get millions to do their glossy magazines, presentations and so on, or to do things as regularly, because we are run not even on a shoestring budget, but with none at all. It is just voluntary work. Ultimately, the projects that do not involve DPOs need to be sanctioned as a result, which is laid out in general comment 7. This is not reinventing the wheel. We ratified this.

A massive cultural shift is needed in the State to overturn the idea that representative organisations are DPOs. Non-DPOs have taken on the mantle of being representative organisations. This has been shown in documents from this committee from July 2021. We engaged with it on that matter. It happened during the setting up of the Disability Participation and Consultation Network. Disabled persons organisations and representative organisations were included. Instead of being synonymous, with DPOs being the only representative organisations, this differentiated DPOs from representative organisations. This happened as early as March 2020, in the national disability inclusion strategy review done by the Department of Justice. This misconception is ingrained and a cultural shift needs to happen. It does not matter if a charity or service provider is led by a disabled person. It is still not a DPO under the conditions required to be a DPO. Generally speaking, a service provider cannot be a DPO. There are very rare exceptions, which I suspect would only happen in the case of persons with intellectual disabilities.

Rather than defining DPOs out of having a representative role, much balance needs to be redressed and lost ground needs to be made up for. Much is happening right now. The National Disability Authority was set up in 1999. That subsumed many functions given to DPOs, such as advice to the State, which is embodied in the National Disability Authority. That needs to be looked at. We also have the disability steering group. Only a tiny minority of representation on that is from DPOs. The disability consultative committees in various Departments involve hardly any DPOs in their own right. The Oireachtas disability group involves hardly any, or no, DPOs. All of this needs to be reversed.

We have given many examples. The most significant issue is the implementation plan for the UNCRPD. It is astounding that we have not even been approached about that core topic. Instead, the National Disability Authority and disability steering group have been approached. It is no wonder that Article 4.3 does not feature at all in the State's report on the UNCRPD. The core basis of the UNCRPD and of DPOs is missing. Without that cornerstone, there cannot be any meaningful implementation of the UNCRPD.

Michael Moynihan (Cork North West, Fianna Fail)
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I thank Mr. Sinnott. I am mindful of the importance of the evidence, but unfortunately we have time constraints in the committee. We must try to get to everyone's questions. I thank the witnesses for their opening statements. I ask members to be mindful of the clock.

Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail)
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I am sorry that I will have to leave. I have another meeting to attend. I thank all the witnesses. A witness referred to the Electoral Reform Bill. Do the witnesses think it goes far enough for equality of participation both when voting and when running for office? I see it at elections when people come to me. A man who was visually impaired came to me during the last election. There was hassle when trying to sort things out for him. We need to make sure that we have the opportunity for people who want to run but feel that there are barriers. Is enough being done about that?

Also, I was very impressed by Mr. Sinnott when he spoke about not having social media. It is important that we look at funding with regard to social media because that seems to be the way forward now. Social media will have a major part to play for all of us to move forward, so we must look at that.

Ms Browne spoke about disability awareness and a meaningful roll-out. I am a firm believer in awareness and, like everything in life, it is unless one is affected by it or a family member is. It is important that people with a disability have a say and that needs to be part of an awareness campaign so there is proper awareness of people who it affects. I said previously in one of our meetings that for years Carlow had a beautiful train station, but there was no lift. The lift was installed a few months ago, but it was unacceptable that a wheelchair user would have to cross the train track to get across to the other side. Again, these are issues we cannot keep fighting for all the time. We must make sure that there is an awareness and we must put funding into it. I am a firm believer in funding an awareness campaign on where we are falling down.

Other speakers spoke about access. That has to be addressed. We also probably have to look at other countries and how they are doing it because I believe we are behind. That is another area again. We spoke about meaningful consultation with people with disabilities and their DPOs. There must be a standard definition and framework. If there is no framework in place or essential register of all public bodies to consult with, that needs to happen urgently to ensure a structure through consultation with regard to policies that affect people. It is all about policies and we must make sure that we deliver them. We also must implement them.

The other issue is funding. For me, the core issue today is funding. I will not keep the witnesses long. I again thank them. It is important that we listen and make the change, because we must.

Michael Moynihan (Cork North West, Fianna Fail)
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Perhaps Mr. Kavanagh will respond on electoral reform, followed by Mr. Sinnott and Ms Browne.

Mr. Leo Kavanagh:

On politics, as I stated already, in the Houses of the Oireachtas today we have 0.5% representation by people with visible impairments. I am sorry, but that is not good enough. In the last census of population, 13.5% of people bravely stated that they had a disability of one form or other. There is a big difference between 0.5% representation and 13.5% of the population. That is why I am looking for a quota system for people with disabilities so they can also be part of the political sphere.

Mr. Robbie Sinnott:

On the voting issue, I took a High Court case in which I was successful, but it has generally only just begun even on independent voting. Ultimately, we would be looking at an Estonia-type online voting, but it seems there is no appetite for that. There is no engagement on it, which is the worst thing.

In terms of political participation, Article 29 of CRPD, to go back to the basic routes here, if a blind person wants to go to the constituency office of the local Deputy or councillor, he or she will not be able to find it and cannot do it independently. With approximately 80% unemployment, blind people will not be able to afford to get a taxi there. I know things have improved somewhat with Covid-19, but previously many people wanted eye-to-eye contact. It was not the blind people necessarily, who would be happy enough with the telephone, but the politicians themselves. Even starting with that basic connection, we have had experience of that down through the years and we have raised it with party leaders. At the same time, the very basic problem for visually impaired people is the fact that a lot of the information is not accessible. How can one participate in planning consultations with the local authority, for example, or in anything else if one cannot read, and does not know, what is out there?

Michael Moynihan (Cork North West, Fianna Fail)
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The time is up on this slot, but I will come back to Ms Quigley and Ms Browne who wish to contribute. The next speaker is Deputy Higgins.

Emer Higgins (Dublin Mid West, Fine Gael)
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I thank our witnesses. This has been a very interesting debate and it is fantastic to be here to participate in it. Mr. Sinnott spoke about his High Court case and I congratulate him on that. The need for us to reassess public consultations to make them more accessible and inclusive is certainly very practical feedback that would make a difference for including people, particularly blind people, in those public consultations.

My question is for Mr. Kavanagh. I was struck by what he said about HSE waiting lists. We were all very encouraged that a new budget was allocated for tackling waiting lists in the last budget. However, people are waiting six months for wheelchairs, and the Brexit impact on the price of prosthetic limbs is an increase of 30%. Combined with the fact that many people may ultimately lose their medical cards if they get to a point where they are starting full-time work, this definitely disadvantages people, from a healthcare perspective, who are already marginalised in our society. I am interested to hear Mr. Kavanagh's views on any practical measures the committee can advocate which he thinks would lessen that burden on people in this situation.

Mr. Leo Kavanagh:

I will explain something to Deputy Higgins. My physical disability is that my left leg is 10 in. shorter than my right leg due to congenital hip deformity. I wear surgical footwear with a 10 in. heel. I do not know if Deputy Higgins can see it, but it is like what the glam rockers used to wear back in the 1970s. Each year that costs me €1,700 or €1,800. I have to pay that out of my pocket because I am a PAYE worker. I am not entitled to a medical card. It is difficult at times. That would basically be a fortnight's salary for me. I am very lucky in that I live in a family home. If I had to pay rent and so forth, I would not be able to afford to pay for my footwear, which basically affords me the privilege of being able to get from A to B.

Emer Higgins (Dublin Mid West, Fine Gael)
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To comment on that, a thing I worked on with the Minister for Social Protection, Deputy Humphreys, over the past year or so was the introduction of a grant towards the price of wigs for people who suffer from alopecia or who have lost their hair due to cancer. If we are able to provide €500 towards the cost of something like that, why are we not providing €500 towards the cost of the budgetary situation Mr. Kavanagh has outlined because of his disability? That measure was particularly aimed at PAYE workers. Would Mr. Kavanagh think that would be a start? Is it something the committee could advocate for that would help?

Mr. Leo Kavanagh:

Of course it would. However, this should have started 30 years ago. We are playing catch-up, and we are doing it very slowly. If Deputy Higgins can have a word with the Minister, Deputy Humphreys, and tell her there is a guy in County Laois who is paying out a fortnight's salary for surgical footwear that he really requires, I would be very grateful to her.

Emer Higgins (Dublin Mid West, Fine Gael)
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I will certainly ask, and I will refer back to Mr. Kavanagh with the response.

Mr. Leo Kavanagh:

Go raibh maith ag an Teachta.

Ms Lianne Quigley:

I thank Deputy Higgins for her question. It comes down to the fact that we need more funding in the deaf community and specifically for interpreters.

We do not have 100% access to interpreters. We very much depend on availability and the frameworks that are currently in place. We have the sign language interpreting service which is provided but is limited. It is limited as to when it is open and it is limited as to when interpreters are available, for example at weekends. We need an increase in funding to access interpreters. That is my first point.

Regarding deaf people becoming involved in political life, it is very difficult for a deaf person to run for election or possibly even consider campaigning within politics because there is no budget there. No funding is provided for canvassing and consultation with possible voters. In that way, they cannot become involved within political life. We need a definite change in cultural attitude to be able to see a better, more diverse and more inclusive society in which disabled people and their identities are involved and not just stereotyped or labelled negatively. Attitudes and funding are the two things that need to change.

Ms Jacqui Browne:

Following on from Ms Quigley's point, the agenda for today's meeting relates to how we develop the foundation of the true participation of DPOs rather than getting stuck into the nitty-gritty of specific matters. Participating in politics or participating in a forum like today's is the very foundation of democracy. In talking about Ireland being a truly democratic society, democracy demands that everyone is involved, including disabled people. As mentioned earlier, we are nowhere near the proportional representation of disabled people in Irish society vis-à-visthe number of disabled people in the population. I make that broad point.

I will give a specific example related directly to this committee. I did some research and my understanding is that this is the 37th meeting of the Joint Committee on Disability Matters. While the committee has done some fantastic work, having gone through all the witnesses who have appeared before the committee to date at all its 37 sessions, this is only the sixth session to which DPOs have been invited which is a very poor record on the committee's part. Before talking about what other people should be doing, we may need to look internally at our own practices. Committee members need to be mindful of that. There is nothing like a good example to illustrate a point as any parent will know from teaching their children. It is the same principle and the committee should consider it a bit more when planning agendas for future sessions and whom it invites - and includes or excludes as the case may be. Those are the critical points I would make.

Regarding capacity building, if the committee genuinely wants to see more participation and the development of DPOs in this country, we need to have ring-fenced funding. It is required under Article 33.3 of the convention and is further developed under general comment 7 which specifies that organisations of persons with disability should have appropriate resources, including access to independent and self-managed funding. We cannot be held with a tag line, "You can only use this funding for X, Y or Z - our way or no way". That is not the kind of funding we are looking for. We need funding that respects the work of DPOs to promote the voice of disabled people across Irish society.

Pauline Tully (Cavan-Monaghan, Sinn Fein)
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I thank all the witnesses for their presentations and for attending the meeting. In its recent report, Ensuring Independent Living and the United Nations Convention on the Rights of Persons with Disabilities, the committee recommended that additional consultation should take place with DPOs. Like everybody else, we are also learning the difference between a properly constituted DPO and some other representative organisations. A proper register is needed so that public bodies that wish to carry out consultations, which they should do on all issues, know whom they should contact.

The term "disability, participation and consultation networks" suggests that is a body people should go to. However, it is not made up of DPOs. Therefore, that needs to be reconstituted or a different body put in its place to represent DPOs so that if different bodies need to consult on issues, they know they are recommended to whichever body represents the people they need to speak to.

I was struck by a point Ms Browne made about consultation. Consultation is not enough; they need to be involved in the decision making. Many disabled people to whom I have spoken may be involved with housing strategic policy committees, SPCs, or transport organisations. They meet and give their recommendations which are subsequently simply ignored. It needs to be more than just a box-ticking exercise for these bodies to say they have consulted with disabled people and then they can move on and do their own thing anyway. These public bodies need to be held to account to ensure that when they consult with DPOs and get recommendations they implement those recommendations. I would be interested in any thoughts the witnesses have on that how and how it can be improved.

What is the best way for children with disabilities to be represented? Is it to have a DPO of parents of children with disabilities?

Ms Jacqui Browne:

There is some very useful documentation, which on behalf of the DPO network we can share with the committee after this meeting. The UN Committee on the Rights of Persons with Disabilities developed helpful tools published on its website. They refer to different tiered levels of consultation. That could address the issue. Deputy Tully is right to point out how critical it is. The convention calls for specific consultation with women, girls and children with disability. This documentation and guidance on tiered level consultation - number one would be the pure DPOs, number two would be, as the Deputy pointed out, parents of minors or children with disability. There would be others like a person nominated by disabled people to speak or support them in having their voice heard. It is similar in ways to parts of the Assisted Decision Making (Capacity) Act where someone might choose to appoint a decision-maker to support them in their life. It is that kind of idea. I hope that is helpful to the Deputy.

Mr. Robbie Sinnott:

I agree with the points Ms Browne and Deputy Tully made.

Deputy Murnane O'Connor spoke about awareness raising. Awareness raising cannot hold a candle to the fundamental structural need to embed meaningful consultations, as Deputy Tully said, in the decision-making process itself with DPOs. That is the structure. It is not possible to conduct a survey of 5,000 or 10,000 disabled people every time; that is what the DPOs are for. We are the experts and we know what our members need. We live it and we know it.

Regarding architects and engineers raising awareness about disability, they just think, "There's that disability thing again." and just tick the box. Their idea of universal design is to balance their desires with the so-called needs of disabled people. We know who will win out there. As I said before, there are no blind architects or civil engineers.

General comment 7 of the UNCRPD is also clear there is a hard line to walk in that they need to ensure where children's voices are represented it is their voice and not somebody on their behalf. It requires a clear majority of DPO members to be disabled, but there is also room for parents or guardians of disabled children in DPOs. VVI would certainly welcome parents of children with disability.

From our shadow report to the UNCRPD, which we have on our site, we know that parents' extraordinary needs are being ignored by the Department of Education.

Michael Moynihan (Cork North West, Fianna Fail)
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I call Senator O'Loughlin.

Eileen Flynn (Independent)
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Chair, I am down to speak before Senator O'Loughlin. On my list, I am down as No. 10. It states that-----

Michael Moynihan (Cork North West, Fianna Fail)
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I am sorry. I will tell Senator Flynn what happened. Senator McGreehan has given her spot to Senator O'Loughlin. Deputy Canney is not present, so Senator Flynn-----

Eileen Flynn (Independent)
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This always happens to me and others go before me at committee meetings. That is fine.

Michael Moynihan (Cork North West, Fianna Fail)
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My apologies. Senator Flynn is the next speaker after Senator O'Loughlin.

Eileen Flynn (Independent)
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No problem.

Fiona O'Loughlin (Fianna Fail)
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I appreciate that Senator McGreehan from my own group has swapped with me because I have a Commencement matter to raise today.

I thank the witnesses for their compelling testimony. Day after day at these meetings, I am humbled by what I hear. We had the pleasure of meeting Ms Browne a few weeks ago. She is a compelling witness.

I will ask a few key questions. Mr. Kavanagh spoke about the cost of a prosthesis increasing by 30% since Brexit and a silicone sleeve costing more than €1,000. What exactly is a person entitled to when, unfortunately, he or she has to have a limb amputated? I tried to look up the details after he spoke. I believe a person is entitled to just one prosthesis, but I do not know the entitlement as regards silicone sleeves. I would appreciate if Mr. Kavanagh clarified this important issue for us.

The question of disability awareness raising and training arises time after time. I would be interested in the witnesses' views, in particular those of Ms Browne, on how awareness raising and training can be meaningfully rolled out around the country. Does it need to be delivered by people with disabilities?

Mr. Sinnott in particular spoke about the experience of not being consulted. Perhaps he will comment on the general experience of consultation on policies that impact on the lives of people with disabilities and what improvements are needed.

I hope I can stay until the end of the meeting, but I am on call to race up to the Seanad.

Mr. Leo Kavanagh:

I thank Senator O'Loughlin for her questions. I am not an amputee and do not speak on behalf of my colleagues who are, but as to what someone is entitled to upon leaving the National Rehabilitation Hospital following an amputation due to illness or injury, I will speak with my colleagues who are amputees and contact the Senator's office. The silicone sock has an exorbitant price. This country is going to have to stop tendering for these items in Britain and instead move to mainland Europe. We are part of the EU and will have to tender to companies outside the UK that design prosthetics and silicone socks.

It was lovely that the Senator said she was humbled by what she heard. I thank her for that, but I ask all of the politicians present to act on what they are hearing. We are getting tired. At times, we feel like we are like an old scratched vinyl record, in that we just keep playing over and over. We need the good people of this Oireachtas committee to act upon what they are hearing and bring our suggestions to the Minister, please.

Mr. Robbie Sinnott:

I will make a brief comment on something Deputy Tully said about DPOs and other representative organisations. Where disability matters are concerned, the UNCRPD and the new paper from the National Disability Authority, NDA, make it clear that the only representative organisations are the DPOs. There is a framework laid out in general comment 7 as to what properly constitutes a DPO. It would be helpful if that framework was applied when the State organises its register. This will be a cultural shift, but when the register is being put together, the State has to consult DPOs, although I know that is a bit like the chicken and the egg. In everything directly involving disability, DPOs come first but DPOs also have to be involved in other ways because everything affects disability, as set out in general comment 7, paragraph 17.

Everyone filled in the census forms on Sunday night. Since most severely visually impaired people were not able to do so independently, they were in the same position as they were in 1901. That is not acceptable. I am unsure about Wales or Scotland, but at least two of the three nations of Great Britain have allowed censuses to be filled in online since 2013. The Central Statistics Office, CSO, did not respond to us formally after we looked for something similar, only by phone. This is a case where others literally have to be people's voices. People will not discuss sensitive issues that need to be filled in. For example, where they are asked whether they were previously married, they might have to say that they have never been married. Who knows? The service providers will only do one type of Braille, which they enforced in 2013 regardless of what the rest of us learned in school and have used for all the intervening years. There is only a click of a button in the difference in a drop-down menu, but all of the Braille service providers in Ireland ideologically refuse to do it, so even when the questions were sent out in Braille, they were not accessible to many Braille readers.

I referred to our Capel Street consultation. We made a submission to that, but it will be aggregated among the thousands of others, especially from cyclists. Cycling is fantastic if you can cycle, but the rights of disabled people to access their own environment safely is enshrined in European and Irish law. It is in Article 8 of the European Convention on Human Rights. This is something that we cannot take for granted. For someone who is visually impaired, getting from one end of Capel Street to the other used to take 20 minutes. Now, it takes well over an hour. One of our members described it to me yesterday as "traumatic".

There is e-scooter legislation and, in 2019, the then Minister for Transport, Tourism and Sport issued a ministerial order and announced that he was giving €2 million to the National Council for the Blind of Ireland, NCBI, to set up a wayfinding centre. Problematically, the intention is for the NCBI to be placed at the core of consultation on any matter relating to transportation in this country, but that is clearly inimical to the UNCRPD and the role of DPOs. We were not consulted on the wayfinding centre and do not believe that there is a need for it. It is an opportunity cost because people need to be trained and helped in their own environments first and foremost.

Ireland has to implement the European disability Act by June. We wrote to the Department of Children, Equality, Disability, Integration and Youth – we sometimes call it the "Department of Everyone" – last July to see whether we could help with the consultations. We were completely ignored and did not even get a response. This is the sort of issue we are meeting.

This is the tip of the iceberg. Our voice has either been aggregated among thousands of others at best or else just completely and utterly ignored.

Ms Jacqui Browne:

I thank Senator O'Loughlin for her questions. I will very briefly remind members, as we referenced in the opening statement, that back in February, the Disabled Persons Organisation, DPO, Network sent the committee a reasonably detailed letter outlining what we presume is helpful as clarity in terms of definitions and terminology with regard to the distinction between DPOs and service providers, which has already been spoken about by all of us today. We offered very clear distinctions and that is really important going forward.

More substantially, however, I would be concerned that coming out of today, the committee might place an undue emphasis on the value of disability awareness exercises and funding disability awareness. I will be extremely honest here and I suppose I am speaking personally. I am retired now. I worked as a disability equality consultant for more than 40 years in a self-employed capacity. I did a huge amount of work around supporting disability awareness and equality training. I would really question the value of delivering or undertaking awareness-raising exercises unless they are tied to a specific expected outcome or behaviour one is trying to address or change. Therefore, just going off and delivering a set ofPowerPoint slides, whether it is by disabled people or not, is not awareness raising. We really need to get our heads around what the purpose is. Why do we want to throw buckets of money at raising awareness unless it is tied to a specific task, objective or, ultimately, a change in behaviour, be that around how committees work or how a public participation network, PPN, might work and how it involves people? We must link it to a direct expected outcome.

Michael Moynihan (Cork North West, Fianna Fail)
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I thank Ms Browne. We will start with Ms Quigley at the next point. We will now go to Senator Flynn to put her questions.

Eileen Flynn (Independent)
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In 2012, and I am not comparing myself to anyone in the room, I remember being in a wheelchair for three months due to surgery I had in National Orthopaedic Hospital Cappagh. I spent much of my childhood in Cappagh hospital with some injuries. What I can say, and what I know from having to use the services is that, as Mr. Kavanagh said, it is actually very expensive. It is very costly to be disabled in Ireland today. I do not know how much it is to rent a wheelchair in the country nowadays but it was €100 per week in 2012. In one month, a person is out one month's wages from renting a wheelchair. From a personal perspective, I have an awful lot of empathy for people who have to work really hard and then spend their money on basic needs.

Last week, the Minister, Deputy Humphreys, presented to the committee on grants and money that is available for people. I do not think that is enough, however. We talk about people running for elections. I remember speaking in 2020 about the reform of the Seanad and how it should be representative of people who have disabilities. One Senator emailed me to let me know he had a disability. My point was that just as it is not good enough to have one member of the Traveller community in our Parliament, it is not good enough to have just one member of our Parliament who has a disability.

A man who is deaf ran on the same panel as me for the Seanad elections, namely, the Labour panel, although, unfortunately, he did not get in. He missed out on a few votes, similar enough to myself. It is very difficult. We should have a quota in our political systems at local and international level for people who are disabled. That is a crucial piece of work on which we should all be working together.

In this committee in general, people do not really understand the difference between DPOs and Disability Participation and Consultation Networks, DPCN. It is terrible when someone with dyslexia tries to read out those letters; it is a bit difficult. We need to be very clear on our understanding as a committee around what it means. What are the witnesses' takes on it? I know that DCPNs are different from DPOs and that much of the time, they overlap. Ms Browne touched on that. Could she give us a clearer understanding? I think our language is critical. I have so many questions but I will leave it there. Again, Ms Browne talked about the 37 meetings we have had and that we only had six around DPOs. How can we do better in engaging with DPOs?

Ms Lianne Quigley:

I thank Senator Flynn for her questions. I fully agree with her when it comes to setting up a disabled persons quota, particularly in the Seanad. To have a deaf person or a person with a disability is important. A deaf person ran for election but, sadly, did not get elected. It is incredibly important to have that representation.

To go back to the point about the DPCN and DPO, the DPCN would include service providers within its meetings. There is a broad range of members within that. It can, therefore, sometimes be difficult to challenge those members within those meetings. These meetings have been going on for approximately two years and it is very clear from them that the DPCN is not a DPO.

I will go back to Senator O'Loughlin's points about improving consultation and the involvement of disabled people. It is so important to have access and resources in place to make sure to include all different kinds of disabilities, for example, to provide an Irish Sign Language, ISL, interpreter. If there are no resources, that completely excludes some disabled people. They are completely excluded straight away. I know, for example, that sometimes deaf people would go to a meeting but no interpreter is provided so they are automatically excluded. We need, therefore, to make sure we have the accesses in order to provide inclusion and access to everyone.

To speak briefly about disability awareness training, Ms Browne is right. I fully agree with the idea that there is no point in just having presentations without them being tied to specific actions. From my experience, I feel it is very important to have a disabled person actually leading the disability training because it has a greater impact on those who are attending it. Again, it depends on what the specific aim is. If, for example, deaf awareness or disability training were being provided to someone's workplace, it is important to have a disabled person there to actually be able to relate the lived experience. Similarly, if it is in a school with a deaf child in a class, it is important to deliver training that is specific to that workplace or that environment's needs related to the disabled person's own experience.

Ms Jacqui Browne:

I thank Senator Flynn for her questions. The Senator was seeking clarification on the whole issue of the DPCN. We must remember, and it has been referenced a few times already this morning, that disabled people historically have been excluded. We were hardly spoken about never mind having a place at the table. However, because of, and thanks to, the UN Convention on the Rights of Persons with Disabilities, we now have a rightful place at this table and many other tables to participate and not just be heard or asked what we think.

The days are long gone when people would pat a disabled person on his or her head and ask someone else whether he or she took sugar in his or her tea. The problem is disabled people in this country still struggle with what I call disentangling historical attitudes where service providers for very large groups and organisations that provide services spoke on our behalf and represented what they believed were our needs to the Government, Departments, Ministers, politicians and, indeed, through their charity fundraising. Where service providers are associated with representing the voice of disabled people, that must stop. To be fair, some good service providers acknowledge that and are very supportive of DPOs. There are some people who really support DPOs and are very mindful to step back in order to let disabled people take their rightful place in society and talk about their own lived experiences. We referenced that in our submission last February and our opening statement today. It would be great if the committee could get their heads around that. I understand the Disability Participation and Consultation Network was invited to send representatives to attend today. The network declined because it decided that, as it was not a DPO, it was not its place to attend a meeting for DPOs. I wish to acknowledge their respectful decision.

Holly Cairns (Cork South West, Social Democrats)
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I thank all of the witnesses for attending. The United Nations Convention on the Rights of Persons with Disabilities obliges the State to closely consult with and actively involve disabled people, including children with disabilities, through their representative organisations. This is an incredibly important provision and one that very clearly the Irish State is not adhering to. The Disabled Persons Organisations Network rightly noted that the Assisted Decision-Making (Capacity) (Amendment) Bill has been developed without proper engagement with DPOs. In addition, the disability support services have produced draft codes of conduct without the involvement of DPOs. Therefore, if the Department that oversees the UN Convention on the Rights of Persons with Disabilities cannot get this right, then we are right to wonder what hope there is for the rest of Government.

I am a member of the Joint Committee on Children, Equality, Disability, Integration and Youth. I want to let the witnesses know that the committee has just finished its report on the Assisted Decision-Making (Capacity) (Amendment) Bill and one of the recommendations is to immediately revisit the codes of conduct in consultation with DPOs. On Tuesday, I raised these concerns in terms of the Government's Electoral Reform Bill due to implications for facilitating disabled people participating in the democratic process and standing for election, which is an issue that has come up a lot during the conversation so far. The Department of Housing, Local Government and Heritage does not seem to have engaged at all with DPOs on this incredibly important matter either.

My first question is for Ms Browne and Ms Quigley and concerns a point they made in their opening statements. Can they outline whether Departments have engaged with DPOs on legislative or policy matters? How would they recommend Departments go about meaningful consultation in the future? If this committee is to hold Departments and public bodies to account, then any guidance they can give us on the standards they would expect, and we should all expect, would be very useful to this committee.

My next question is for Mr. Sinnott. All of the witnesses who have come before the committee mentioned that Ireland has not ratified the optional protocol of the convention. This committee is pushing the Government on that matter. I ask Mr. Sinnott to elaborate on the significance of ratifying the optional protocol as it would be useful for us to put that argument and reference what he says. If there is time, I will ask Mr. Kavanagh a question.

Ms Jacqui Browne:

I will address the broad issue of Departments approaching DPOs. I can say that it does not happen. I have highlighted that there must be capacity building and funding. We are getting lots of invitations to attend things or respond to consultations. As has been said here several times this morning, we are volunteers and we do not have 1 cent. We have the knowledge but we do not have the capacity to respond in terms of resources. We are not going to be idiots and we will not sit up until 2 o'clock in the morning writing responses to the State that will probably be left on a shelf. Until DPOs are respected by being funded and resourced to deliver and to genuinely participate in the State and in matters of concern to us in our lives, then there is no point in expecting us to respond. The expression: "Pay peanuts and you get monkeys" springs to mind. We will start as we intend to finish. The State must show respect for DPOs and fund them properly in order for them to participate.

Ms Lianne Quigley:

I agree 100% with what has been said by Ms Browne. In terms of timelines, often there is a last minute consultation with DPOs. We have staff but we have limited funding and we rely a lot of our own fundraising and self-funding. We delegate people and we are very limited in what we can do. As Ms Browne said, many of us are in other employment. Today, I gave up my time at my job to attend this meeting. Just picture being asked to attend several meetings in one's own time. Funding is the main issue. Will funding and resources be made available to DPOs?

Mr. Robbie Sinnott:

I will return to a couple of other issues before I respond to the question about the optional protocol. In 2020, the DPCN was set up based on a misconception. It refers to DPOs and representative organisations. It does the opposite of acknowledging, in that it actually states that the only ones which are not representative organisations are DPOs when the opposite is true. It is a very basic misconception by the "Department of Everyone". That is fundamental. As Deputy Cairns said, if the Department gets it wrong, and this is the focal point of the UNCRPD, then that is very serious and the Department should be accountable.

The DPCN and that space receives €100,000 a year. Is that purely to just get stuff? We have a meeting with the DPCN tonight as we are on the steering group. I have great respect for the colleagues we will meet there but that is not a DPO space.

I wish to make a related point that follows on from what Ms Browne and Ms Quigley said. We are volunteers and we go to the trouble of working very hard on policies, etc. There is no point in us going to meetings where we are in a tiny minority and everything must be filtered through, including if it is on the disability steering group. As a representative we have to represent non-DPOs yet our own members are not properly represented. Everything is filtered down and mediated but that is not what our members deserve. I am only entitled to represent our members. Our members are expected to go along to meetings that might last two hours, of which only five minutes might concern something directly related to us. The whole structure needs to change. People need to come to us and ask what is the best way for us to interact and not for them to decide the way to do things, and just deciding at the last minute as they do.

In terms of the optional protocol, if I were the State I would delay it for a very long time. The State's performance on the UNCRPD has been so bad. The cynic in me says the State will delay this as long as it can, and possibly until 2029. Even when asked for feedback on the initial State report on the UNCRPD, it more or less ignored everything in the actual report published in November. I am thinking, in particular as we are here with DPOs today and it is a very central issue, that it just passed it off and did not include the DPOs. Shockingly, Article 4.3, which is the cornerstone of the UNCRPD, is not mentioned in the State's report.

I do not know why. I think that, to a certain extent, it is just people doing what they do because that is the way they have always done it. There is a perception that these are the new kids in town and a question over whether they are house-trained and so on. There may be some prejudices in that way from a civil servant's perspective. One key civil servant in the Department said to me in November, when we were talking about the role of DPOs, that we have to live in the real world, to which I responded that the real world is the UNCRPD. I have not heard from him again but he was a key person within the Department. Many civil servants do not get it. They have to be told what the UNCRPD is, but we are always here to explain.

Erin McGreehan (Fianna Fail)
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I welcome our guests. It is lovely to see them all in attendance. I was taken aback by what Mr. Sinnott quoted a departmental official as saying about us having to live in the real world. That official, I am afraid, is not living in the real world and needs to read up on his brief, whoever he was. It is disappointing to hear of that attitude among departmental officials.

I was attending a separate committee meeting, so I apologise if I end up going back over previous questions. We in this committee have such good intentions and really want to do our best. What are our guests' main asks in the context of what we could do very simply? What could we do to push Departments? Do we need to regulate for a process whereby DPOs will have to be included in consultations? Time and again, at meetings of various committees of which I have been a member, this lack of meaningful consultation is a critical stumbling block in regard to so many issues, and the Assisted Decision Making (Capacity) Act is just the most recent example of that, albeit a prime one. One of our guests referred to the electric vehicle legislation and the blanket ban on cars coming into Dublin city centre. These are ableist policies and we are not looking after our citizens.

I fundamentally agree with Mr. Sinnott and previous speakers that we have to fund DPOs. We have been funding disability services and advocacy groups for decades, but we have not funded and supported disabled persons to be their own advocates. I cannot see anybody being a better advocate for disabled persons than disabled people. It is about time we shook that up and made sure we had meaningful change. County Louth launched its first DPO in December and Ms Paula Soraghan attended the committee meeting. She made a powerful contribution in explaining the importance of disabled persons organisations and of being her own advocate. Who among us wants anyone else to speak on our behalf? We should not expect a disabled person to accept that either.

I am a great supporter of the campaign Personal Assistance Service Now. There is something of a grey area in regard to disabled persons being allowed to have a personal assistant, PA, at a political meeting. How do those restrictions impact on disabled persons who might need a personal assistant in taking part in political campaigns or being active within their communities? As we all know, we need more diversity at the political table.

In summary, would allowing personal assistants to attend political meetings help people partake in political activism? What simple and clear asks do our guests have of this committee? Finally, what are their opinions on the clear funding of DPOs and how that will impact on them personally and on the entire sector? I think I know what the answer to the final question will be, but I want to hear it in their words.

Ms Jacqui Browne:

I thank the Senator for her questions and general comments. I am a bit confused about one question but I will address that presently. On the funding question, we need to be very clear when we talk about resourcing and developing the capacity of DPOs through funding. This is not about funding individual disabled people. Importantly, this is about developing the representative voice of disabled people by disabled people about issues of concern to disabled people. We need to have that clear, open and transparent, with no hoodwinking. It is important we design and develop everything properly. As for who should be involved in that, I hope that at this stage of the meeting members realise that there should be nothing about us without us. If there is only one message they take from today, that might be it.

On the PA question, the Senator confused me a little but I think she realised in her own way that, in asking the question, she was confused herself. She seemed to suggest there is a problem with a PA attending a political meeting with a disabled person. Is that correct?

Erin McGreehan (Fianna Fail)
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Given out guests' expertise, I was asking whether there is a problem in regard to that grey area. I do not have a problem but I was wondering whether there is a general one.

Ms Jacqui Browne:

What is the grey area and who is defining it? If my PA joins me in attending a meeting of any political party or even during this meeting, what is grey about that? The person will be my PA but will not speak for me. A person might need someone to speak on his or her behalf but not to speak for that person. I am not clear on what the Senator was getting at.

Erin McGreehan (Fianna Fail)
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Media reports have suggested there was confusion whereby personal assistants have not been allowed to attend political meetings, following an incident a couple of years ago. I am asking for Ms Browne's expert opinion. Given PA service has not been legislated for, I considered it a grey area.

Ms Jacqui Browne:

In a true PA service, the PA works for the disabled person, whom some people call the "leader", although not everyone buys in to that language. The PA works for the individual disabled person. He or she does not represent that person unless that is his or her specific requirement, as stated by the individual with a disability. It is not that there are two voices. I recall some incidents where people have pointed out there were two people in attendance at a meeting and argued there should be only one. When people do that, it shows they do not understand the idea of having a PA.

Erin McGreehan (Fianna Fail)
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I fully agree. My point was that there have been media reports suggesting a PA was not allowed to attend a meeting, and I wanted to hear our guests' views on that. Such a scenario is outrageous because it is the disabled person who attends the meeting, not the PA.

Ms Jacqui Browne:

In response to that, I would ask whether the Senator believes everything she reads in the media, and leave it at that.

Mr. Leo Kavanagh:

I thank the Senator for her questions. This committee has good intentions and I applaud its members. They are doing good work. We are not out to be adversarial here; we want to assist them. In respect of DPOs, the first step that is required is a register of DPOs, which has to be created immediately. Second, the disabled members on the DPOs, whom most DPOs comprise, must be consulted, first, last and always.

There is most certainly a need for funding of DPOs.

Most certainly, we are broke. We do not have a bob unfortunately.

I will speak about myself. Last year from the month of July until January of this year, I took a career break - first, to train to be a qualified trainer, that is, to be able to give disability awareness training courses and, second, to launch my DPO, Physical Impairment Ireland. Nobody put a gun to my head and said I had to do this free of charge. It was a decision I made myself. I was very lucky to be able to do so.

In regard to personal assistants, and I thank the Senator for that question, the nature of my physical disability is that it is degenerative. I do not know whether I will need a personal assistant in ten years' time but if I go to a meeting please God with my personal assistant, he or she will know when to speak and when not to speak because I will cut him or her with such a look, as I have done all my life. He or she will know when to speak on behalf of Leo, and when not to. Personal assistants do not just work for people with disabilities but from my experience, they work with them. They do great work.

Michael Moynihan (Cork North West, Fianna Fail)
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I thank Mr. Kavanagh, Ms Quigley and Ms Browne

Mr. Robbie Sinnott:

I wish to answer some of the questions Senator McGreehan put. In regard to key asks, I agree with Mr. Kavanagh that a register of DPOs is overdue. It has to be under general comment 7 on what constitutes a DPO. Without that how can they have proper funding? How do councils know who to go to? Within the DPOs, some of us are in good seaworthy boats - I will not say yachts - while others are not even in canoes. We are all going in the same direction in terms of what we are doing but some of us are just starting up while others have been at it longer. Where I am going with this is that we should be able to look to the future and say that there are other DPOs and other constituencies clearly not being represented by DPOs. There needs to be a framework in order that they can set up. That needs to be there. That register is important. These are immediate asks. There is a much longer list in general comment 7. I sent that document to the committee, including that, back in October. I can send it again, that is, exactly what general comment 7 states needs to be done in terms of legislation. One thing that can be done immediately is that the "Department of Everyone" needs to send out a memo to all 600 quangos, Departments and so on, letting them know that DPOs need to be prioritised in all consultations and decision-making and to be closely involved. That memo needs to go out. The Department clearly needs to get the memo itself, because it does not even act on that itself. It has to be brought home to the Department that it has to live up to its obligations on behalf of the State under Article 43 and to take them very seriously.

Talking about personal assistants, if I had €3,500 I could buy a Braille note-taker and I could be reading away here on Notes. I could have a digital Braille watch for €400 to time myself, so that I do not run over time. I do not have that. None of our representatives has that.

Michael Moynihan (Cork North West, Fianna Fail)
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I thank Mr. Kavanagh, Ms Quigley, Ms Browne and Mr. Sinnott for their evidence today. Funding, recognition and the comment from an official in respect of the real world is extremely telling. It is extremely telling because whose real world are we living in? We have to be all-encompassing and ensure everybody is facilitated. Our committee has met on 37 or 38 occasions over the past while. Our members are extremely committed to advancing the cause, to doing right and to making sure that when we are finished the life and the circumstances of people with disabilities are highlighted and improved. Sometimes we speak almost in a vacuum. We speak to witnesses every Thursday morning and very powerful evidence, no more than what was given today, is given to us in regard to the daily challenges the witnesses have. We launched a report on some of the work we have done on Ensuring Independent Living and the UNCRPD four weeks ago. No member of the media cared to turn up to go through the report with us. If we started throwing rotten apples at each other, we would be on the front page of the Irish Independent every week but members of our committee put party politics aside when they come into the room and do what is right. That is from our side. If witnesses take that to their side, to the DPOs and the organisations they represent, and the invisibility within mainstream media, it is not trendy enough but it is the lived and the life experience.

Depending on the statistics, 20% of people have a disability of some form, which is one fifth of our population. There is a huge challenge to try to make the case and highlight the challenges that are there. On a Thursday morning, we hear the phrase "the real world" that reflects the attitude. Our committee and the Houses of the Oireachtas have to make sure the real world shines a light on what the real world is for 20% of the people and make it better.

I hear the witnesses loud and clear in regard to the issues they have raised. We will continue to bang the drum as loud as we can. Maybe we need to bang the drum louder and get the percussion set going rather than just the drums to make it a bit louder but we will certainly do that.

I thank the witnesses for their powerful evidence. Mr. Kavanagh made his point, although not in an adversarial way. The stronger the witnesses are to us, the stronger we can be in highlighting the challenges. They should not apologise or question this in any way. The stronger they are to us, either collectively as a committee or privately, the stronger we can be because we can only act on how they are empowering us. We will continue to do so.

I thank our members for their dedication to the job in hand and our background team.