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Joint Committee on Disability Matters debate -
Thursday, 7 Oct 2021

Participation of People with Disabilities in Political, Cultural, Community and Public Life: Discussion (Resumed)

I advise everybody that this meeting is being broadcast live this morning. If they need to eat, drink or take a break during the meeting, I ask them to turn off their camera temporarily. I will call people by name and invite them to answer questions. Anybody who wants to make a point should raise their hand. I will call time after five minutes and witnesses may finish their opening statements.

Apologies have been received from Senator Fiona O'Loughlin. The purpose of today's meeting is to discuss the participation of people with disabilities in political, cultural, community and public life. It is the last public session on this topic. Tomorrow is world blind today. I extend a welcome to Emilie Conway and Isolde Ó Brolcháin Carmody from Disabled Artists and Disabled Academics, DADA; Niamh Daffy and Odhrán Doherty from Cara Sports Inclusion Ireland; Robbie Sinnott from Voice of Vision Impairment; Gerry Kerr, a member of Dublin City Public Participation Network, PPN; and Louise Loughlin and Suzy Byrne from the National Advocacy Service.

I remind members that they are only allowed to participate in this meeting if they are physically located on the Leinster House complex. In this regard, if members are joining the meeting remotely, I ask them to confirm that they are on the grounds of the Leinster House campus before making a contribution. Due to these unprecedented circumstances, I ask everyone to bear with us should technical issues arise.

I advise witnesses that they are directed to give only evidence connected with the subject matter of these proceedings. Witnesses 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 the witnesses giving evidence from a location outside the parliamentary precincts to note that the constitutional protections afforded to witnesses attending to give evidence before the committee may not extend to them. No clear guidance can be given on whether or the extent to which the evidence given is covered by absolute privilege of a statutory nature. Persons giving evidence from other jurisdictions should also be mindful of the domestic statutory regime. If witnesses are directed by the committee to cease giving evidence in relation to a particular matter, they must respect that direction.

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

I ask Ms Ó Brolcháin Carmody and Ms Conway to make their opening remarks.

Ms Isolde Ó Brolcháin Carmody

My name is Isolde Ó Brolcháin Carmody. Along with Emilie Conway, I am part of Disabled Artists and Disabled Academics. I am a visually impaired wheelchair-using artist. I have been working in the arts for more than 20 years.

My practice is informed by my unique perspective as a disabled person living in an abled world. My community arts practice focuses on voices that are routinely silenced and sidelined. I am sure that committee members have not heard of me or my work. This is partly because much of it has been undertaken without getting paid. If I get a grant from the Arts Council or if I get a commission, it is counted as means, not income, and is taken directly off the top of my blind pension. If an organisation employs me for a particular project, the maximum amount I can earn is €140 per week, after which whatever I am paid comes directly off the top of my blind pension. Our social welfare system expects me to let it know any time my income changes, but an artist's income changes all the time. Plus, informing the Department of Social Protection triggers a review. Reviews are intrusive, extensive and stressful. They can take months, during which time we do not know if we will lose everything on which we depend to survive.

This is all based on the principle that disability payments should be means tested. We also have to undergo medical audits and testing. We have to somehow prove that our long-term disabling conditions - I was born with mine - have not magically fixed themselves. Means testing is demeaning. It takes no account of the actual cost of being disabled, it takes no account of the real cost of living, and it takes no account of the fact that being disabled is not the same as not being able to work.

Last year, the initial estimate for the pandemic unemployment payment, PUP, weekly rate was €350. My blind pension is €203 per week. Even if I earned the €140 that I was "allowed" by the State, my income would still not reach €350. Added to this is the calculation that living with a disability costs up to €200 per week. By this calculation, I should be in receipt of €550 per week, which is more than double my blind pension.

There are the so-called secondary benefits: the medical card, rent allowance, the free travel pass and fuel allowance. These are the first casualties as soon as one starts earning. Their loss is more acute when one is disabled. We have fewer choices about where we can live and work because of an ableist built environment. We have fewer options for transport for the same reason. We interact with the healthcare system on a more regular basis than our non-disabled peers do, even for supports that are entirely non-medical. These are not secondary benefits to us. Rather, they are basic necessities of survival.

The precariousness of all of these systems keeps disabled people well below the poverty line and in a constant state of fear and anxiety. These fears are not irrational. Disabled people make up 27% of our homeless population, which is more than twice the national average. It is clear that this system is preventing disabled people from working, since Ireland has the highest rate of unemployment among disabled people in the EU.

The state of fear in which we live is exacerbated by the ableist culture within the social welfare system. One of the most common and pervasive forms of ableism that we encounter is when we are not believed and we are suspected or accused of lying. Every interaction we have when seeking support is based on a requirement to prove that we are not lying or cheating, that we really are disabled, that we are disabled enough, that we are not secretly millionaires, and that we, not doctors, are the experts in our own conditions and assessing our own needs. This is exhausting.

Would Ms Conway like to take over?

Ms Emilie Conway

I thank the committee for the opportunity to speak to members. I am an artist in every expression of the word - I sing, I dance, I paint, I write and I even act. I believe in art as a way of life. I also believe in the healing power of art, which it has done for me over and over.

Before this meeting, I had the idea of singing the first three lines of my presentation. If I could sum up what Ms Ó Brolcháin Carmody and I are asking for, it is not to be held back. We are constantly being held back. So---- (Ms Conway sang the following lines):

I am an award winning jazz artist, with many credits to my career.

Invited to perform internationally, I also sell out concerts locally.

Currently, I am mid a commission with the National Gallery

To respond to the landmark Mondrian exhibition musically.

Four years ago, I was an undercover disabled person. I was afraid to speak out for fear of losing opportunities and being treated differently. However, I could not help but notice the lack of diversity in the arts among artists and audiences. I began to wonder where were the other artists and the other people with disabilities like me. The stress of overcompensating was also taking its toll on my health. In order to bring about change, I realised that I had to start speaking up and to speak out and be honest about the challenges we faced as disabled people.

As Ms Ó Brolcháin Carmody pointed out, there are physical and systemic barriers that make it impossible for disabled people to contribute and participate sustainably, securely and legitimately in the artistic and cultural life of Ireland. We are constantly called the "vulnerable" and there are many charities to help us, but the paradox in this is that, if we help ourselves, we lose our supports. We are threatened and penalised for our achievements and successes with the withdrawal of the very supports that we counted on in the first place in order to succeed and achieve. Disability supports are eroded as soon as someone earns more than €140 per week. Actually, it is when he or she is assessed as earning more than €140. That distinction is important, as he or she might not really be earning that much.

On disincentives versus the right to self-determination, I have encountered the perception that benefits - they are not benefits, but supports, and people's lives depend on them - disincentivise people. I find this attitude deeply distressing and void of real understanding of disability. It is drenched in ableist privilege and shows no respect for the disabled person's right to self-determination. What about our right to self-determination? I do not view self-determination as a choice. I cannot stop being an artist, so it is not a choice. Having and dealing with a disability is not a choice. The State must support rather than thwart the self-determination of people with disabilities.

Regarding barriers to artist formation, development and sustainability, how does a disabled person become an artist? The barriers start in childhood. An average middle-income family will struggle to afford the additional cost of developing their child's artistic potential while also paying for the cost of the child's disability. A child with a disability is less likely to access art due to these financial barriers as well as physical barriers. These barriers become even more intransigent in adulthood to the extent that a disabled person, no matter how talented, cannot achieve his or her way into a better situation. This point is worth considering. We cannot achieve our way out of our situation.

With very few exceptions, scholarships, bursaries, commissions, awards and success of any kind are all assessed as means and lead to a reduction in or loss of supports. Would that not put a stop to your gallop? Our non-disabled peers can take up extra teaching work, run Fundit campaigns or whatever they like to fund their art, but we cannot because, if we do, it will be treated as means and our supports will be lost.

Although many free and subsidised courses are made available to disabled people by charities and the State to rehabilitate them back into work, none of these focuses on artistic development. People with disabilities are on their own if they want to be artists. A disabled artist could not be blamed for thinking that the State did not want him or her to be an artist or particularly want his or her work. When a disabled person is not allowed to use his or her strengths, it is not comparable to a non-disabled person's situation. It is not a life. Most of us disabled people have tried. I lied about my sight to get a job in a bookshop, and as soon as it was seen how close I went to money, I was swept off into the back room to peel price tags from second-hand books to prepare them for resale; it did wonders for my self-esteem. It is the use of our talents and strengths that give us an identity beyond limitations. When this is thwarted by the State's systems, we become socially and creatively invisible as human beings and defined by limitations.

If someone defies all of these obstacles and still becomes an artist-----

Might I ask Ms Conway to conclude?

Ms Emilie Conway

I will come back to this. I have circulated a longer document to the committee. I am conscious of the time.

Ms Emilie Conway

What I was about to say was that three different scenarios can play out.

I would like to come back to what happens when somebody registers as self-employed because that is a minefield of mind-bending intricacies and barriers to which nobody seems to draw attention. In view of all this, it is very difficult to see how institutions can fulfil a public sector duty. Disabled artists will not engage because, as we know, in an industry famous for its precarity, it is too much of a risk to take a short-term contract or to engage for low pay and lose supports.

I have a vision. DADA has a vision. We believe art is visionary. Art could lead us into a more diverse and inclusive society. Art holds up a mirror to society. Why should audiences with disabilities attend art events if that mirror does not reflect their experience or who they are, how they are and who they could be? I ask the committee to imagine a world in which people with a disability were supported, not thwarted, to reach their full potential as contributing artists to Ireland's society. I ask the committee to imagine the colour, the energy, the joy, the power and the visionary transformation that that would bring to the arts in our society and how it would change people. It cannot happen under the present penalising system. The present system will only destroy artists with disabilities, stifle their voices and mangle their contributions.

People who have a disability or any visual impairment are not vision-impaired. In fact, because of our limitations, we constantly find creative ways to transcend them and we are full of vision and creativity. The pandemic forced non-disabled people to walk a mile in our restricted shoes and we did not stop hearing about how they struggled with that. As disabled people, we have learnt to accept our limitations but we should not have to accept the ableist systemic and structural barriers imposed on us that artificially limit and restrict our self-determination and our ability to participate and contribute in the arts, culture and broader society - every sector.

In a country where our economy is predicted to take off like a rocket, it is time to level the playing field for disabled people with non-disabled people. Core disability payments need to be a permanent, unconditional, secure support. It is time for us to thrive, just as all the committee members do. James Joyce was a disabled artist. If he had no patron and was instead reliant on precarious disability supports, even more precarious than art, and victimised by these conditions, do members think he would have had the creative energy to write Ulysses? It is worth the committee considering how much art is not created these days because disabled artists have to put up with these penalising and punishing conditions and how much art we do not hear of because, like Ms Ó Brolcháin Carmody said, so many are living like ghosts in our society, unable to come forward with what they do for fear. I thank all members and hope we progress with change.

Thank you both very much. I am mindful of the time, and we are trying to get everybody in, so I ask that we stick to the allotted times. Because some very powerful contributions are being made, I do not want to jump in as witnesses are speaking but we are trying to stick to the clock, unfortunately. I thank Ms Ó Brolcháin Carmody and Ms Conway for their opening statements. In all the Oireachtas committee meetings I have attended over the years, I think it is the first time evidence has been sung into the committee record. I do not think I have witnessed that before on any of the committees of which I have been a member. I now call on Ms Niamh Daffy to make her opening remarks.

Ms Niamh Daffy

Sport and physical activity are central to the fabric of life in Ireland. Perhaps now more than ever there is a growing awareness and understanding that peoples' lives can be enhanced through participation in sport and physical activity, especially by improving health and well-being, increasing social interaction and empowering people to be the best they can be. As citizens of this State, people with disabilities deserve to have equal opportunities to experience the benefits of participating in sport and physical activity. This, we believe, is a basic human right.

I am delighted to join the Chairperson and members of the committee along with my colleague, Mr. Odhrán Doherty, to outline to the committee some key developments in disability sport and inclusive physical activity. While there have been many positive developments in the provision of sport and physical activity opportunities for people with disabilities, with a number of organisations doing great work, research indicates that individuals with disabilities are far less likely to participate in sport and physical activity, volunteer for sport, be a sports club member or attend a sporting event than are those without a disability.

Cara - Sport Inclusion Ireland is a national pan-disability organisation designated to provide leadership and support across policy and programme development specific to the participation of people with disabilities in sport and physical activity. Our organisation aligns with and supports the objectives of the national sports policy, Sport Ireland's policy on the participation of people with disabilities in sport, the national physical activity plan, Healthy Ireland's framework and the national disability inclusion strategy. With a vision of "Putting Disability Sport and Inclusive Physical Activity at the Heart of Our Nation", our work is focused on reducing the gradients that exist in respect of the participation of people with disabilities in sport and physical activity.

Central to our organisation is the voice of people with disabilities. In December 2019, in partnership with Sport Ireland, we launched Ireland's first ever sports inclusion disability charter, developed through collaboration and in consultation with people with disabilities. The charter sets out five principles which people with disabilities have identified as key to ensuring that organisations adopt an inclusive approach to their programmes and sport and physical activity offerings. Over 1,400 organisations have signed the charter, pledging their commitment to provide people with disabilities with increased opportunities to participate in sport and physical activity. This number must increase. Building on the principles of the charter, we continue to work very closely with the local sports partnerships and their sports inclusion disabilities officers, providing support, resources, inclusive training, co-ordination of national initiatives and, most recently, the roll-out of the Xcessible programme, which provides a three-staged resourced pathway for local sports partnerships to adopt an overall inclusive culture across their organisations.

We have seen a most notable increase in the number of national governing bodies of sport committing to providing people with disabilities with opportunities to participate in their sports. Over recent years we have supported national governing bodies in the delivery of inclusive training workshops to their boards, staff and volunteer networks, provided guidance in programme design and developed and implemented an Xcessible programme for inclusion for national governing bodies.

Building capacity across the sports sector has been a key priority for Cara. With the support of Sport Ireland and in collaboration with a number of key organisations, we have designed a range of inclusive training workshops targeting sport, health, education, fitness and the outdoors sector. Over the past 18 months, like many organisations, we adapted our approach and, through the design and development of an online inclusive programme, we delivered a total of 235 workshops virtually to more than 3,600 participants.

We have recently embarked on a new collaborative initiative alongside the HSE and Sport Ireland, which is the design and delivery of an online physical activity education programme specifically for people with disabilities. Active Healthy Me is being delivered across 20 adult day services and, later this year, will be launched for national roll-out and available to all adult day services and residential settings throughout Ireland.

At a time when outdoor recreational activity has gained a higher profile, through funding support from Sport Ireland we have recently appointed Ireland's first ever inclusive outdoor co-ordinator, who will work in collaboration with the sector to increase awareness, access and opportunities to outdoor recreational environments and activities for people with disabilities.

Before the pandemic, we had started to see a gradual improvement in the participation of people with disabilities in sport and physical activity across Ireland. There were certainly more opportunities opening up, more awareness across the sector and increased cross-collaboration. In our efforts to address some of the challenges presented as a result of the pandemic, we are delighted to be part of a national disability sport forum comprising representatives from Special Olympics Ireland, Irish Wheelchair Association - Sport, Paralympics Ireland, Vision Sports Ireland and the local sports partnerships, where we recognise the work in hand to overcome the extra challenges brought by the pandemic. Together with our partner organisations, we want people with disabilities to be at the heart of our nation's recovery.

As we move forward in developing a new strategy for our organisation, a strategy which will be insights-led and will set out an ambitious ten-year vision, we look forward to working with the committee and Departments in continuing to support the programme for Government and national policy objectives.

Now, at a time when sport and physical activity have gained a higher platform of importance, we must seize this opportunity and re-evaluate how we can not only continue to embed the principles of inclusion across the sport and physical activity sector but also expand our reach and supports across the education, health and disability sectors. More importantly, we must continue to engage with and listen to the needs identified by people with disabilities so we can collectively ensure that the necessary infrastructure and supports are in place to achieve our vision of putting disability sport and inclusive physical activity at the heart of our nation.

I would like to thank the Government and committee for the support to date. I thank all of the members of the committee for their time. Mr. Doherty and I welcome any questions members may have.

I thank Ms Duffy.

Mr. Robbie Sinnott

There is a bit of drilling in the background, so if there is any noise that is just the way life goes. I am sorry about it.

I represent Voice of Vision Impairment. I realise the metaphor of vision being used. I am equally happy with the term "visual impairment", which is possibly more appropriate. For the purposes of rhythm, we thought "Voice of Vision Impairment" was easier and better.

The first two speakers were eloquent. I hope we can complement them, in substance at least. I will try to provide lived experience and legal opinion and rights. A legal opinion was recently obtained by Voice of Vision Impairment. It concerns Article 4.3 of the Convention on the Rights of People with Disabilities, CRPD. Article 4 consists of general obligations. If we are dealing with Article 29, which is about political participation, people should first and foremost go to Article 4.3 because it is cross-cutting. It is explained by a 10,000 word document from the UN committee, known as general comment 7. Article 4.3 states that there shall be close consultation with representative organisations. The only representative organisations in terms of disability under the CRPD are disabled persons organisations, as our legal opinion shows. This is a complete change. Instead of service providers which, because of brand names, etc., are the traditional go to, the new experts are ourselves.

We need supports to manage this and make it work. A combination of reasons and things that are happening mean it is not working. There is State indifferent. Third parties such as disabled service providers and the disability industry are trying to colonise or otherwise appropriate the disabled persons organisations, DPO, space, and because they have traditionally done so they have been seen as the representative organisations, which they can no longer be.

A DPO is any organisation that is led, governed and directed by disabled people. A clear majority of its members have to be disabled. It has to be completely independent of the State and other NGOs, including service providers, and they have to be human rights-based and based on a social model which is compatible with the CRPD. Certain long-term supports are needed so that this sort of thing can happen. Such long-term supports would be, for instance, the registration of DPOs.

Deputy Wynne submitted a question to the Department of Children, Equality, Disability, Integration and Youth in July and found that the Department has no plan to register DPOs. How can it support something that it is not even registering? To our knowledge, there are six national DPOs at the moment.

A second support that is needed is the protection of DPO rights, which needs to be legislated for in terms of monitoring and remedy. Even that consultation process can be avoided if the Department is ignoring DPO rights. We have to remember this is cross-cutting. If there is only one thing anybody needs to know about the CRPD, it is Article 4.3 and general comment 7 which states that DPOs are at the heart of the CRPD. Without Article 4.3, the whole thing falls apart.

The State, in its interim report in December 2020, did not mention Article 4, let alone Article 4.3, at any stage. It made two references to DPOs. There are two elements of low-hanging fruit that we can deal with easily. A memo could go out to all Departments and quangos – there are about 600 quangos in the State - stating that DPOs need to be prioritised and distinguished in all consultations. That does not mean aggregated. The word "distinguished" means that there has to be separation. There is no point putting us under a deadline, making us queue and treating us as one out of a 1,000 organisations. We are the experts in an area of accessibility, and that has to be recognised. That is the first thing that could easily be done. Registration could be easily established as low-hanging fruit.

I am not reading anything. I do not remember something I was going to mention, but everything is in our submission. There are emergency problems at the moment. Our experience has been that we have been marginalised and ignored in consultations, and have not been prioritised and have certainly not been distinguished. That continues because there is an indifference. Each Department and quango has an excuse for not doing anything under the CRPD and not prioritising us. They say they are waiting for guidance from the Department of Children, Equality, Disability, Integration and Youth. We have sought this in respect of the focal point of the CRPD since October 2019. We have heard a protocol on such a memo is planned for January, but the Department needs to consult with DPOs on this and it is not doing that. Given that the December 2020 report ignored Article 4, it is not likely that will happen.

In terms of emergency things we need to get done, the Department is currently working on something called the UN CRPD implementation plan, which will be the guidance for the disability steering group for next January. The problem is that, once more, it is not going near DPOs. It is dealing with what it calls the Disability Participation and Consultation Network, DPCN which, as our legal opinion shows, does not remotely comply with Article 4.3 of the CRPD. A tiny minority of its members are DPOs and it is controlled by non-DPOs. The DPCN says it is not a DPO space. This does just not wash. We see this as being an opportunity cost and distraction from the actual needs of DPOs in terms of rights.

The European Accessibility Act, a directive from 2019, has to be made law by June 2022. There has been no consultation with DPOs. This is very unhelpful. We submitted a question to the Department in July and that has been ignored.

On the transport front, the Minister for Transport recently said that local authorities will receive extra powers under e-scooter legislation in December. Streetscapes are disabling because they ignore the needs of people with visual impairments and all pedestrians. A pedestrian is vulnerable if he or she is put up against an articulated truck or a cyclist in a shared space because one side will come off much worse than the other in that situation. We are again being ignored. What the Minister is proposing flies in the face of the CRPD. We have contacted the Department and NTA regarding our worries about transport, and the Department in particular about the latest idea. It is a continuation of the practice of burying the voices of disabled people.

There is a perfect storm. The State is indifferent to DPOs while third parties are at a low level. We do not have the same branding as the NCBI or other service providers. We get zero funding from the State. That is something that has to be addressed. There are 55,000 blind people or people with severe visual impairment in the State, but they are unlikely to have heard of us. We do not have the same reach as other organisations. We have very limited social media skills because all of our members are visually impaired, most of them severely. There is a perfect storm against DPOs. The opposite needs to happen with some urgency.

Disabled persons organisations, DPOs, need to be involved in everything that this committee and the State are doing. They need to be at the heart of it.

Mr. Gerry Kerr

I am the only witness who is here in person, not virtually, today. I have found it inspiring to hear from the initial speakers, Mr. Sinnott, Ms Ó Brolcháin Carmody, Ms Conway and the other contributors whose names I cannot remember because I had some difficulty in hearing. I thank Senators and Deputies for this opportunity. I made a submission approximately one year ago and I am delighted to be here. I hope to add to the conversation in a constructive way. My submission is wide-ranging and I thank three people who helped to get me sorted, Ms Mairéad O'Donovan, Ms Tracey O'Driscoll and Ms Brenda McCauley. They have been very helpful. I thank everybody. My submission will be read out by an application called Browsealoud, which I am told is very listenable.

I have been blind for the past 19 years, before which I was a teacher of young people from disadvantaged areas. Unable to find alternative employment but cushioned by a disability early retirement pension, I have worked in a voluntary capacity for the past 19 years. I have been involved on the board of Fighting Blindness, the National Council of the Blind and Care Leavers Ireland, both as a director and a volunteer. I am also involved in the Dublin city public participation network, both as a strategic policy committee representative on Dublin City Council and member of the secretariat and disability thematic group, which represents over 800 voluntary organisations, 250 of which are from the social inclusion pillar. I am an ordinary person writing from my experiences. I do not have the necessary research or legal proficiency and ask the committee to consider my submission within this context. I warmly welcome the work of the committee and its members and ask them to consider the following specific points.

I will first address disability and the law. In light of the United Nations Convention on the Rights of Persons with Disabilities, the Disability Act needs to be changed. My understanding of this Act is that it gives to the person with a disability a right to be assessed but it does not give the right to have the service which should follow from the assessment. I ask the committee to consider updating the Disability Act to enshrine for people, as part of the plan, that services are a right.

Even within the right to an assessment, I believe that children from disadvantaged areas may have to wait up to two years for an educational assessment. I ask for some form of accountability and monitoring through collecting data on waiting times for disability allowance, mental health intervention, occupational therapy, etc., and that these key performance indicators be made available to all concerned on a Government website. I also ask that some minimum timelines for implementation of care plans be introduced.

I will turn now to medical and GP visit cards. I ask the committee to consider that within the roll-out of Sláintecare, rather than prioritising medical and GP visit cards on chronological age basis, they be rolled out on a basis of disability. This will ensure that those with disabilities are not left last in the queue, which seems to occur often. I believe the expert group established to report on such matters was incorrect in concluding that it is not possible to differentiate between different levels of disability in areas such as asthma and arthritis.

I will now consider personalised budgeting or the money following the patient. I was greatly impressed by a mother with a daughter who has an intellectual disability and had successfully gone through primary and secondary education, and was then in a day service run by one of the large charitable organisations. On an unannounced visit, the mother found her daughter had regressed greatly and was sitting separated from the group, wearing an overcoat on a warm day and talking to herself. She campaigned to the Minister to have the money being spent on the day service given to her to employ a personal assistant for three mornings a week. That was eventually granted and it transformed the life of her daughter who was able to develop her own plan which included swimming, visiting the local youth club and gardening. I realise this will not suit everybody but the principle of choice should be afforded to all, with certain conditions attached. There is one organisation established by the late activist, Martin Naughton, called Aiseanna Tachaíochta which attempts to achieve this.

I turn now to the ownership structure of large voluntary organisations. As voluntary hospitals provide one quarter of all acute services and voluntary organisations provide two thirds of disability services, the ownership at times proves controversial. Recent developments in sight loss services meant that HSE staff had to move quickly to maintain the service until certain land is sold. This leaves the service users in a vulnerable position, despite having contributed large capital amounts to the building of these premises and the voluntary organisation reaping these rewards on sale without reimbursement to the State. Insofar as possible, the State should own these lands and buildings in order to exert control on the type and quality of services provided and the continuity of same. The State may act as landlord under service level agreements to allow voluntary bodies to still run specific services from these lands and buildings.

Although many of the large voluntary charitable organisations started in a small way, with a close connection between the founders and members, this has evolved to many of them being run like exclusive corporations with their boards in control of choosing new directors without any access to power, through their governance, by the members. This has led to scandals where the trust of the public in certain large voluntary organisations has been eroded. The democratisation of the governance structures of these organisations can be achieved through automatic membership of the company or charity by members who have a disability concerned, with the power to attend annual general meetings, vote for directors and propose motions. I ask the joint committee to research this matter to see how many voluntary organisations allow members to do what is a common experience, from the GAA to Educate Together schools, and allow members to vote for directors without needing ratification of a current board member. Independent Living Movement Ireland is an example of good governance in this regard.

The new virtual media platforms make this easier rather than harder to achieve. Public participation networks are now found in all 31 local authority areas. These networks empower people with disabilities to bring about changes in local services. They were set up as a complementary strand to the main work of the elected councillors. The public participation network allows voluntary organisations under the pillars of environment, community and social inclusion to elect representatives to the strategic policy committees of the council. Within the Dublin City Council area, approximately 250 organisations are within the social inclusion pillar, the majority of which deal with disabilities. I ask the joint committee to encourage public participation networks as they allow people with disabilities to influence policy in many areas, such as transport, planning, housing, sports, arts and culture, environmental policy and finance. A practical example is that shared space and bus corridors can be dangerous for people with disabilities and have been changed through representation from social inclusion representatives on strategic policy committees. Plans for the new central library in Parnell Square were changed to include accessible features, such as a quiet space and graphic novels for those with autism.

I will turn to the definition of DPOs. The Convention on the Rights of Persons with Disabilities makes a distinction between organisations, largely service providers, that are for people with disabilities and those that are with people with disabilities. It gives priority to the latter in shadowing the implementation of the convention through the Irish Human Rights and Equality Commission on an annual basis. I ask the committee to endorse and expand this approach under the motto "Nothing about us without us".

The advances in digital technology have literally changed the worlds of people with disabilities. There is a need for new visionary thinking around the role of digital technology for people with disabilities. For example, less than 1% of people with visual disabilities use Braille. I use my iPhone as my eyes to the world. I can email, text, read web pages or write documents all by speech. The advances in machine learning and speech recognition will soon allow all blind people to use smart speakers connected to smartphones, which will allow access to learning and participation in new and evolving ways. The challenge is not so much in digital literacy as in digital platforms becoming easily accessible to people with disabilities. A simple example is audio description which allows blind people to watch films and shows. This technology is at a very low level in Ireland.

The national and private broadcasters should have to implement a policy of using audio-described shows for a certain percentage of their output.

As most young people with disabilities are integrated into mainstream schools, the issues of school ownership and patronage can cause problems. For example, some schools can be slow to admit children with autism. The power balance between the patron and the State can allow the care of people with disabilities to fall through that particular crack in accountability. Even in this progressive era, the State outsources its educational responsibility to private organisations, such as Educate Together. This may, in the future, lead to the same difficulties encountered in respect of the faith-based patrons. I recommend the VEC-type ownership and accountability model for schools.

My next point relates to a medical or disability database. At present, hospitals appear to work in silos when co-ordination of patient data is urgently needed for research, clinical trials and reimbursement for new drugs. Across a range of disabilities, there are great possibilities for new drugs, from treatments for cystic fibrosis to gene therapy for certain forms of blindness. Without co-ordination among hospitals and consultants regarding a reference database, decisions cannot be made to allow clinical trials or to have robust cost–benefit analyses related to reimbursement for certain drugs. I ask the committee to consider systemic change in this area.

I thank the committee members for reading my short, hastily-put-together document and wish them all the best in their endeavours.

I thank Mr. Kerr for his informative contribution. I now invite our final speaker, Ms Louise Loughlin, to make her opening remarks. Afterwards, we will take comments from members.

Ms Louise Loughlin

I thank the members for the opportunity to speak today. I am the national manager of the National Advocacy Service for People with Disabilities. I am joined by my colleague, Suzy Byrne, our greater Dublin regional manager.

Our organisation provides professional representative advocacy to adults with disabilities throughout Ireland to ensure that their will and preferences are heard in decisions that affect their lives. In 2020, we provided more than 3,700 advocacy interventions. These included more than 1,000 individual cases. Seven in every ten of these cases could be described as complex, whereby the advocate helped with two or more issues. We also provided information, advice and support in more than 2,700 instances. We host the patient advocacy service, which was commissioned by the Department of Health. The service provides independent, free, and confidential advocacy for people who wish to make complaints or draw attention to patient-safety incidents or care they have received in public acute hospitals or nursing homes.

We believe that living in residential settings such as congregated settings, group homes, nursing homes and mental health facilities can be a severe barrier to accessing community and cultural life. This point is illustrated throughout the report Time to Move on from Congregated Settings: A Strategy for Community Inclusion, which was published as far back as 2011.

We welcome the refreshed commitment in the programme for Government in respect of decongregation, which involves the movement of people with disabilities from congregated settings to homes in the community with the necessary supports. This allows people to live more independently and become more involved with their community. Advocacy can play a crucial role in ensuring that such transitions are person-centred. Our work is particularly significant in light of the additional barriers to community inclusion and engagement that people with life histories of institutionalisation may experience, and the stigma that is still sometimes attached to being a person living with a disability. However, we have noticed a trend regarding a slowing down in the closure of congregated settings. We have also noted that the issues associated with these settings have been compounded by Covid restrictions.

Visiting restrictions meant that people living in services had prolonged periods without access to their communities or face-to-face contact with friends or family. People have told us that they had feelings of isolation, loneliness and anxiety. Even the vaccine roll-out impinged on people's community participation. In some instances, family members sought to prevent the disabled person from receiving the vaccine. Our work ensured that did not happen. This meant the individuals concerned could become more involved in community life as public health restrictions were lifted.

Some residential services have rigid schedules. This can be due to issues such as staffing and resourcing but, for the person living in them, it may mean having to eat food at a certain time, having strictly enforced sleeping schedules and a lack of access to transport. This results in limitations on participation in community and cultural life.

We aim to empower people to become active participants in decisions about their own lives and decision-making. This is in line with both the Assisted Decision-Making (Capacity) Act 2015 and the UN Convention on the Rights of Persons with Disabilities, UNCRPD. We look forward to the full commencement and implementation of the Act next year and to the decision support service going live.

As referred to by previous speakers, there is a financial cost to attending cultural events, engaging in the community and participating in public life. In 2020, 12% of our cases were about finances. People with disabilities sometimes find that family members and carers are overly controlling of how they spend their money. We have experience of cases in which people still cannot access their own bank account, in which people are not consulted on how their estates are managed and in which residential services seek information about why a person is accessing their funds. We also have experience of cases in which people do not have sufficient funds left for social activities after paying for nursing home charges.

Important facilitators to accessing community and cultural life are home support and personal assistance services. There is no statutory provision for either of these. Access depends on geography. There should be a standardised national system to ensure everyone has equal and fair access to these supports. We welcome the current consultation by HIQA on the development of draft national standards for home support services. This should be extended to personal assistance services.

We ask the committee to recognise that this lack of support and consequent lack of autonomy for a disabled person directly contravenes the UNCRPD article to enable active participation in the community. It may prevent disabled people from becoming involved in public life or cultural events. While we recognise the reasons behind this are complex, we urge this committee to recommend that all care and support services be resourced and supported to ensure all people availing of such services can live their lives as fully as possible.

We thank all the members of the committee for their commitment to disability matters, and we would welcome the opportunity to provide more information this morning or at a later stage. We will be launching our suite of reports on advocacy matters on 20 October. We will highlight in more detail the impact of Covid on the people we advocate for. Members are all welcome to attend. I thank the Chairman and members.

I thank our witnesses for their powerful presentations and for raising the challenges they pose to this committee as it proceeds with its work. We are very much behind time. I am anxious that members, if they have questions for the witnesses, direct them directly to the relevant witnesses.

I thank all the witnesses for their contributions this morning. These meetings always give me so much. I thank the witnesses for their time.

My first question is for Ms Conway and Ms Ó Brolcháin Carmody. They spoke about the language employed when someone has to apply for a social welfare payment. A payment is described as a benefit, rather than what it should be, namely, a support. This others people and implies they have to be cared for. It is not care they want; it is support. The attitude is a barrier in many Departments. I have a feeling that supports such as those in question should be moved to the Department responsible for enterprise and trade, or a completely different section. How do the witnesses believe this would change attitudes across Departments, particularly regarding employment activation?

I have loads of questions. The witnesses probably will not get a chance to answer them all. How effective does Mr. Kerr believe the PPN has been locally? I feel it involves a very personal approach and requires a good system, with good people listening. One county could be more receptive than another.

I have experience of navigating public transport and public spaces with a visually impaired person. In Mr. Sinnott's experience, has the Department engaged with any of disabled persons' organisations to try to make transport more accessible, inclusive or understanding?

My last question is for Cara and Ms Daffy. Cara is fantastic. I was a receiver of one of its courses on disability and sports inclusion a couple of years ago. It was a wonderful day and I learned an incredible amount. In a purely practical way, as a member of Glenmore Athletic Club what active supports are available to make it more inclusive? We are actively engaging on a regular basis but, as Ms Daffy knows, it is all volunteer based. What is available for clubs to encourage and help people, to make sure they are doing the best job on inclusion and are not just there with loads of interest and empathy, which is no good? We have to know what we are doing if we are going to be a proper, inclusive club. Finally, are there any staff members or ambassadors in Cara with a disability?

Ms Isolde Ó Brolcháin Carmody

I will answer in respect of disabled artists. I thank the Senator for the question and for raising the issue of language and what it represents. I am sure the committee has heard plenty about the difference between the social model and the medical model. To summarise, the social model states we are disabled by the built, cultural and societal environment in which we have to operate, which does not take account of our needs. The medical model states the problem is with us as individuals and, therefore, the best procedure is to fix us as we are broken people. The supports for disabled people in this country are utterly based on the medical model. You have only to see how many of our supports come through the HSE and the Department of Health even when they have nothing whatsoever to do with medicine. In fact, often, a medical setting is one of the most ableist you will encounter because the medical model states we need to be fixed and if we are not fixable then what the hell are we doing in a hospital?

The Senator is correct that the nature of supports for disabled people needs to go around every Department. We are everywhere. Ms Conway and I have been presenting on these points as artists. We have attempted to engage with the Department of Tourism, Culture, Arts, Gaeltacht, Sport and Media and we are forever bounced back to the Department of Children, Equality, Disability, Integration and Youth. That is a ghettoisation. It is saying that any issue we have, whether it is to do with our working life, our human rights or our legal capacity, will always be bounced back to what is essentially a junior ministerial position within a very broad-ranging Department.

The whole system really needs to be rebuilt from the ground up on a social model. As Ms Conway said, these are not benefits. They are fundamental supports that help to realise our fundamental human rights. They do not go far enough in doing that but that understanding needs to permeate every Department and every interaction we have with Departments.

Mr. Gerry Kerr

I will say a little in response to the first question. I thank the Senator for her amazing questions. I agree wholeheartedly with what Ms Ó Brolcháin Carmody said. I have a constructive suggestion on universal basic income, which is a basic right for people. Finland has introduced this but most governments are afraid to introduce it for various reasons. There was a recent recommendation that it be introduced for artists because they have gone through such a difficult time during the Covid pandemic. I suggest it could perhaps be introduced for people with disabilities.

I will refer to what the Senator and Ms Conway said about the fears people with disabilities have. For example, a friend of mine with two children who lives alone on a disability allowance is afraid, if she earns anything at all, that her medical card will be taken from her. Again, it is the medical model and the sense of fear of having to jump through it. If there was a solid, basic, guaranteed income that does not depend on anything other than having a right to it - it could be something similar to the €200 to €300 that is currently there - it would remove much of the fear and encourage the kind of creativity that has been spoken about.

On the question of the PPNs, I am a great believer in them. It is still a very unknown structure. It started under the Local Government Reform Act 2014 and is now embedded in all 31 local authorities. There is something like 15,000 groups right across the areas of social inclusion, community and environment. It is something that is beginning to work its way through the system. It will allow ordinary people to empower themselves within local government and there are great possibilities for that. At present, the Department of Rural and Community Development sponsors all 31 local authorities in that it supplies a support worker and a resource worker. It is quite small, but it is having a major effect. The challenges lie with councillors realising we are not a threat and that we are representing groups rather than individuals. The other issue is co-ordination. Many people talked about groups, including sport and all the rest. These all happen very much at a local level. Small grants are available at local level through the partnerships and, hopefully, co-ordination will increase through the PPNs. They could be used in that way. I could say much more but I have said enough already.

Ms Emilie Conway

I will follow up on what Ms Ó Brolcháin Carmody said about language. A change in language could represent a shift to a social model. That could also prompt more cross-Departmental collaboration, which is required. I will give a further example. We have tried to contact the Department of Tourism, Culture, Arts, Gaeltacht, Sport and Media and get bounced back to the Departments of Children, Equality, Disability, Integration and Youth or Social Protection. We have not been able to communicate directly and many things are changing within the arts at the moment, especially in response to the pandemic. We have not been able to represent the experience of artists with disabilities at any of those levels.

I will speak briefly about self-employment and how the Department of Enterprise, Trade and Employment has, to the best of our assessment, not been involved when the Department of Social Protection, through all the disability payments, supports self-employment. Our experience is that it looks like there is lack of connection in making legislation and regulations. First of all, the blind pension is taxable, which means, unlike other disability payments that are allowances, people on the blind pension are bounced into having to register as self-employed at very low levels of additional income, approximately €6,000. Means test reductions apply immediately that do not take into account a self-employed disabled person is competing in an open market with disabled peers, with the additional cost and impact of disability, to make a living. The State offers many supports to non-disabled employers to hire disabled people. However, it does not offer any supports to disabled self-employed people. Again, there is no input from the Department of Enterprise, Trade and Employment.

The timeframe of audits does not coincide with Revenue's annual assessment and the criteria of assessments differ between the disability allowance audits and the Revenue audits. This brings about inaccurate and misleading assessments resulting in an unfair adjustment of support. This points to a disconnect between the two Departments. It also results in, at least, a double administrative load for the person with a disability in self-employment. The uncertainty attached to the timing and fall-outs of these two distinct audits are detrimental to physical, emotional and mental health. Furthermore, the double administrative load the disabled self-employed endure versus our non-disabled peers is a discriminatory practice.

For the blind pension and disability allowance, the mandatory change of income reporting within three months remains. This is wholly inconsistent with being self-employed as an artist where income varies hugely over a 12-month period. On the subject of audits, we had a self-employed disabled artist audited last year in the middle of the pandemic. We put in parliamentary questions to the Department of Social Protection raising the necessity of auditing a disabled person in the middle of a pandemic.

The artist also had a health situation so was cocooning. The response by the Department was that in its process it had taken into account and was compliant with all of the restrictions. The audit is an absolute expression of ableism because the Department took no account of the risks and insisted that the artist, who was cocooning, bring in somebody from the outside thus risking contracting Covid to complete the audit. Needless to say, the audit was wholly out of step with the person's returns to Revenue and was inaccurate.

Mr. Robbie Sinnott

I will cover two points before answering the transport question. As far as I know, in Norway blind people receive the average industrial wage because the State recognises the discrimination encountered in terms of employment. That scheme should be extended here to blind people and people with other disabilities. In Ireland, the Census 2016 figures show that at least 75% of blind people at an employable age are unemployed. That is not due to anything intrinsic to them but is due to systemic discrimination.

The blind pension has anomalies. It is discriminatory to discriminate from one disability to another. Many blind people find themselves in receipt of the blind pension. There is much less of a disregard for a spousal income for the blind pension when compared with the disability allowance. Again, the medical card disregards are much higher for the disability allowance than for the blind pension. In terms of bank accounts, again there is a difference because one is allowed to have €50,000 for the disability allowance yet only €20,000 for the blind pension. These are disablist anomalies and is pure discrimination. There probably are cases waiting to happen but I do not know. The European Union laws are quite weak on discrimination against disabled people. We definitely have a ridiculous situation in this country. Another anomaly is that it is difficult for a person to be transferred from a blind pension to the disability allowance.

In terms of the Department of Transport, we have been in contact with the Department over the years but we have been ignored roundly and soundly. In October 2020, we wrote to the Minister for Transport and only got an email response in June 2021. The Minister, in his email, said that he understood the DPO thing. He also said that he would let the National Transport Authority know about it and bring any matters that we raised to a consultative committee on accessibility, which apparently is comprised of disabled people.

There are about ten statutory committees located throughout various Departments, the HSE, etc. These are not DPOs but are mostly representatives of service providers or individuals. The whole idea of a DPO is that it channels the voices of personal lived experience into collective agency and pooled expertise. That is its advantage. Instead of talking to 500 or 1,000 people the State can talk to one organisation that can say it has talked to its members over the years and knows from experience what happens thus ensuring that everyone is more in tune with realities. However, we have been left in no-man's land in terms of the Department of Transport.

Accessibility looks bleak because the Department insists on putting cycling and walking paths together. We want cycling and walking paths completely segregated. Over the past 15 years I have been knocked down five times in Dublin by cyclists using the footpath. Therefore, complete segregation is needed. We do not paths lowered to 50 mm to accommodate cyclists but raised to 125 mm like in Northern Ireland. We have compiled a 23,000 word document on transport needs and planning but what is the point in doing that work if nobody is interested? The CRPD says that we have to be prioritised in this work.

We have regularly met representatives of Irish Rail. The Pelletstown railway station is newly opened but we got zero consultation on that and any proposals that we did make were completely ignored. There is a proposal to have shared space in Tralee. In Limerick, the situation has completely deteriorated and the shared space at the plaza is completely inaccessible to blind people. Projects are going ahead and the powers that be do not care and have their own agenda.

For the Luas West or Luas plus, there is talk of having shared spaces with cyclists and pedestrians going over bridges. We have repeatedly said that shared space is dangerous. It is as dangerous to people over-70 years as it is to a blind person who cannot see a cyclist approach. Various bridges have already been created but they are being used as skateboard ramps. Irish Rail has its own agenda. It gives no thought to social justice and climate justice. It has its own narrow and blinkered way of looking at things.

Ms Niamh Daffy: I thank Senator McGreehan for her questions. I thank her for her kind word about the disability inclusion training that she attended recently. I will answer one of the questions and Mr. Doherty will answer the question on supports for clubs.

My organisation's team does not currently have an individual with a disability but we did in the past. We do have individuals with disabilities who engage with our organisation in other areas through members of our board of directors where we have individuals with disabilities but also some of our board of directors have personal experiences through family members. Senator Martin Conway is one of our board of directors and he is joining this meeting today.

Senator McGreehan mentioned ambassadors. We have ambassadors of our organisation who are individuals with disabilities across various sectors of society. We are very much connected to the Paralympics. Also, some very high-profile role models connect with us from time to time. Equally, we engage with individuals with disabilities who have come on board as champions of inclusion in sport and physical activity.

We have launched a campaign that is connected to the charter that I mentioned in my opening statement. The charter is very much about the voice of people with disabilities and what people ask of the sector. As we developed that campaign we engaged with individuals with disabilities to become champions of our organisation and promote the vision of society that is inclusive when it comes to sport and physical activity. We engage with those individuals from time to time to develop some of our projects across the organisation.

As we move to develop our new strategy we are very conscious of engaging with the sector as a whole. We seek to listen to the needs of people with disabilities from the point of view of their experiences and challenges but, in particular, what gaps exist across the society and discovering ways to enhance active and health lifestyles for individuals with disabilities. That is not only in the sports sector but right across the sectors of education, health, disability and outdoor spaces. Even from today, I look forward to engaging with some of the individuals that are on the call here, and the organisations they represent, so that we can further embed the message of inclusion, and having active and health lifestyles for everybody.

I hope that I have answered the Senator's questions and Mr. Doherty will respond to the question on clubs.

Mr. Odhrán Doherty

I thank Senator McGreehan for her questions. She has identified key areas. The most recent research that my organisation has seen is by the Irish Sports Monitor that indicates that there is still huge gradients between people with disabilities engaging in club activities compared with people without disabilities. In terms of an inclusion overview of clubs, that research also tells us that 85% of sports clubs want to be inclusive but may not have the knowledge and awareness to make that happen.

There are a number of practical steps that could be taken. There is an organisation, in Cara, that we do support clubs with. We also heavily engage with national governing bodies and local sports partnerships. To me, the first step that a sports club can take is to sign the sport inclusion disability charter because that will create the framework and support within the club to take the first step to be inclusive. The charter covers five key areas as follows: A club must have an open attitude towards inclusion; there must be a focus on development of people so that is the volunteers, the committee and coaches; the development of inclusive activities; a club's facility considerations; and lastly, and possibly the most important, is the need to promote activities to the local community. Promotion is about making people with disabilities aware that the opportunity is there for them to participate in their local community and that the club would welcome a person with a disability.

The second step concerns awareness. One of the key areas that I have identified is the lack of knowledge and awareness among club members on how to be inclusive, which was the initial question posed by the Senator.

Our suite of training and education provides good knowledge and awareness in a number of areas, including disability inclusion training and autism in sport training, which give that basic knowledge and understanding for coaches and volunteers about how to communicate properly with a person with disability, how to set up appropriate activities and all those practical steps to create the best experience and the best environment for people with disabilities in clubs. A key element of a club is to provide education to the committee, the executive of the club. If it leads from the front that tends to filter down to the coaches and volunteers on the ground.

One of the toolkits that we are launching early in 2022 is an accessible club toolkit. Ms Duffy spoke earlier about her accessible work with local sports partnerships, LSPs, and national governing bodies, NGBs. That accessible toolkit for clubs will support the work by the LSPs and NGBs. It will create a framework for clubs to work towards creating a more inclusive environment for people with disabilities. It is a guided approach and it creates a stepped approach and framework, based on the headings of the charter for clubs to implement those changes.

We have good links with national governing bodies of sport and particularly with the local sports partnerships. They are a key link for clubs. We are in a good position in Ireland through funding from Sport Ireland and the national sports policy that every sports partnership in the country has a sport inclusion disability officer, whose role is to engage locally with clubs and disability groups to increase participation among people with disabilities in sport and physical activity. They are a local resource and a local link for clubs.

Clubs need to understand the capacity they have within the club network in terms of their coaching capacity and the capacity they have within their facilities. They also need to understand the motivations of people with disabilities wanting to join the club. We often think of people with disabilities coming to participate in our games or activities. From our point of view we would like people with disabilities to get the full experience of club life, including being able to go and spectate at a sporting event, become a committee member, become a coach and be more visible in those roles in clubs. It is not always focused on participation. We are also interested in all those other aspects of club life. We would be happy to engage with the committee again in future.

This may be a bit rude, but I wanted to shout out to a club member of Glenmore AC, David O'Hare, who is representing Ireland in the 100 m race at the SUDS Open European Trigames today at 2.30 p.m. We are very proud of him.

We wish David the very best of good luck.

I thank all the witnesses for joining us today and sharing their experiences with us. Ireland has a disgraceful history of almost trying to hide disabled people or certainly treating them as a charitable model or a dependent model. We saw how quickly that could change when we referred to Catherine's law. Catherine Gallagher was able to keep her disability payment while receiving her PhD funding and rightly so. More needs to change.

I ask Ms Ó Brolcháin Carmody and Ms Conway to outline if there is a best practice we could follow from a different country. Mr. Sinnott mentioned Norway. Does any other country have better practice doing this? I had recent engagement with a disabled person who wants to start his own business and he found that no supports are available to enable him to do that. The supports are available to employ somebody with a disability, but not for self-employed people. I am working on something with him to try to change that but I would welcome any advice the witnesses have.

As this committee is tasked with the implementation of the UN Convention on the Rights of Persons with Disabilities, we need to interpret it properly and ensure that other Departments do likewise. I thank Mr. Sinnott for his legal advice an Article 4.3. A register of disabled persons organisations is vital if the proper consultation is going to take place with the Disability Participation and Consultation Network, DPCN, or with any Department or local authority. How should that be done? I know Deputy Wynne submitted a parliamentary question on this. The committee needs to follow up on that to ensure it is done. They mentioned that they are the new experts. I do not think they are the new experts, but they are experts who have not been utilised or listened to up to now. That would be very important.

Mr. Kerr also mentioned personalised budgets, which are also very important. If the convention is to be implemented properly, it is vital for people to have choice. People cannot have choice unless they control their own finances so that they can decide what they need in their life, whether that is a personal assistant, assistive technology or whatever. The national advocacy service is vital so that people have the ability to make that choice for themselves. We need to move to that. Much work needs to be done in this country before we get near that, but it is the role of the committee to ensure that. I would appreciate any support and advice the witnesses can give us.

Ms Isolde Ó Brolcháin Carmody

I will answer the question about Catherine's law and best practice and I will ask Ms Conway to talk about being self-employed. Catherine's law does not apply to me as I am in receipt of the blind pension. I am one of 1,069 people in the country out of 55,000 blind or visually impaired people in receipt of the blind pension. As Mr. Kerr or somebody else said, changing from the blind pension to another payment is very complex. I can only credit this to being an historical anomaly. The rate of the blind pension has not been kept in step with the disability allowance. If I get a PhD bursary, which I am entitled to apply for in the near future, it will be counted as means and I would no longer get the blind pension, my medical card, my fuel allowance, my living alone allowance, my free television licence. The whole gamut of extra supports immediately goes down the tubes once someone is deemed as having more than €20,000 in their savings account.

There is a major disconnect between the different systems, which I think is just historical. I have been in receipt of the blind pension since I was 18. I once had a phone call to the old age pension office trying to explain that I was coming off the back-to-education allowance and going on the back-to-work enterprise allowance. I was transferred to five or six different people because nobody in the old age pension office knows anything about these things. They do not know anything about scholarships or bursaries either.

There are other payments, such as incapacity benefit and the invalidity pension. How can we still be using the term "invalidity", someone who is invalid, in this day and age? That is shocking, but it is indicative of us having inherited this historical system based on poor laws where local health boards decided on what the deserving poor needed. It is not rights based at all.

The Deputy asked about countries with best practice. I have engaged in discussions on this with groups such as Independent Living Movement Ireland, ILMI, and Disabled Women Ireland. No country in the world seems to have got it right. That means that if we get our act together, Ireland will lead. We could determine what is best practice. We could determine the best way of implementing the UN Convention on the Rights of Persons with Disabilities and take a leadership role. It is possible for Ireland to do that. We do not need to copy other countries.

I will ask Ms Conway to talk about what is involved in being self-employed.

Ms Emilie Conway

Ms Ó Brolcháin Carmody took the words out of my mouth. We have an horrific human rights record at the moment with how we treat our vulnerable and how we treat women. It is time for us to take a lead. As Ms Ó Brolcháin Carmody said, I have also not come across any country that has got it right. I am part of creative Europe's EU PUSH panel of artists. We will be going to Norway in January regarding a creative lab and a creative process with different bodies. I will then be working with many European artists. I have raised this exact point with them to discover how Europe treats artists and how other European countries support them. So far it does not seem as if anybody has got it right and therefore Ireland could lead. As I do that work, I am happy to feed back to the committee what I discover.

On setting up a company, a point that Deputy Tully raised, some artists do that and our experience has also been that they are put in the position that their enterprise must succeed in two years. This is just ableism. Whenever we do anything, it is like we are put into the framework of ableist expectations and that our disabilities go away as soon as we do anything, but they do not. People do not overcome - I do not like that wording - a disability. We achieve with our disability. Just because we have a disability, that does not mean we cannot achieve. What all this points to is a system that never expected those of us at this meeting and people like us to achieve anything. We were bunged into institutions and, as we know, people are still hidden away in institutions in Ireland, which is criminal.

We are bumping up against the system, just as Catherine Gallagher did, because we were never expected to achieve. I recall a visit to my eye doctor when I was in secondary school. He never spoke directly to me but always to my parents over my head. He winked at them one time and said, "You know, she might actually manage college". I was like, "What?". The system's expectations of us are so low and demeaning. This all needs to change. As we are seeing, people with disabilities do achieve. It should not be based on that either. There should be equal support and no need for someone to be a massive achiever to be supported. Everybody should be equally able to do whatever they can do in their lives and be supported to do so. I thank the committee.

Mr. Robbie Sinnott

Talking about Catherine's law, I am about to do a viva at the end of October or early November to get my doctorate, touch wood. It is a PhD in Irish, not in disability studies or anything like that. Access to the library, etc., has been a nightmare. I am talking about Trinity College Dublin, but it is not necessarily just a problem there. The system is not designed for visually-impaired people or to allow visually-impaired people to go very far. That is why we have the lowest take-up rates in third level education, and that has a knock-on impact on unemployment levels.

There are other anomalies with the blind pension. Assessments, means tests, are done but it is impossible to get an accessible copy of three months' worth of bank statements to send to the Department. How does that work? People who are totally blind are still regularly sent the means test questions in print. Those people might not even know that they have received the stuff. This is how Victorian and antiquated the thinking is in this regard. The system is badly broken. I think the idea is to get rid of the blind pension. The numbers seem to be dropping and it seems that only about 1,000 people are receiving it now, out of 55,000 people overall, as Ms Brolcháin Carmody said. It is possible to get the disability allowance at 16, whereas people can only get the blind pension at 18. I know what I would be doing if I was aged 16 and blind. I think it is being got rid of by stealth, but through means that are obvious for anybody on the payment.

Regarding the points made by Deputy Tully, it was clear from the response from the Department of Children, Equality, Disability, Integration and Youth to the question from Deputy Wynne that the attitude was that there was so much to be done that it would happen some time down the line. The approach to the UNCRPD is like that of rabbits caught in headlights. Everything takes so long. DPOs are supposed to be central to the 2030 agenda. These are immediate requirements. We ratified the UNCRPD in March 2018. The Department has known about these actions for a long time. How long do we have to wait? Will we be still alive when DPOs are granted their proper role? It is incredible carry-on.

Mr. Gerry Kerr

I will make two positive and constructive suggestions. The first concerns the questions and contribution from Deputy Tully. I note what she said about the way that we hid away disability in Ireland by putting people into asylums, industrial schools and mother and baby homes. People with disabilities, whatever the type of disability, were often among that cohort. I would love to see us coming to terms with that and recognising it as part of our history. The Garden of Remembrance in Parnell Square commemorates our heroes of 1916. I think our real heroes who brought about equality were the women and children who went through those asylums and mother and baby homes. We are now beginning to achieve a certain level of equality, although it is obvious from this meeting that we have a long way to go. The experiences I spoke of should be recognised. I would like a garden, an equality park, created to mark that history. Perhaps it could be located on the old site of the Rotunda hospital, once it moves out to Blanchardstown.

My second suggestion relates to DPOs and registration. Six exist now, which is a small number. I am keen on the idea of DPOs expanding. I ask the Department to have a look at that. I recognise that some excellent work has been done by this committee on the UNCRPD and the budget proposals from this group. It is important to recognise that. Regarding the DPOs, there are approximately 3,000 charities in Ireland and more non-voluntary organisations. Many of the big organisations started off well and were close to their members but have now developed a corporate culture. As members know, within a corporate culture, if you do not listen to members and you are not accountable to them, you can make big mistakes. That can happen. I will not name anyone, but we know that from the scandals that have happened. I ask the Department to look at section 39 organisations, which are service providers, and democratise their governance to ensure that small, exclusive groups of people on boards are not electing people like themselves to their boards and annual general meetings are not just meetings among themselves. I ask for that to be done.

Many more DPOs could be led, directed and governed by disabled people. I do not rule out organisations that support people. The natural inclination for me and many other people when we got involved first was that we wanted to offer support. We can also advocate as well as support. That point could be borne in mind.

Ms Louise Loughlin

I endorse the comments made by the previous witnesses. Some powerful testimony was given about people's experiences. As well as the issues that people have flagged around social welfare, access to employment and access to supports for education and self-employment, it is important that those living in different types of settings are also supported to access their communities in respect of the issues we have highlighted. Some of those individuals will need access to independent advocacy to enable them to do that. I emphasise the importance of such additional support. We must not lose track of these issues as well. Many people are still living in residential services in Ireland and we want to support them to live a lives of their own choosing, whether that is in a residential service, living independently in the community or living in supported accommodation. That is our aim. Part of that undertaking involves supporting people to enable them to access community and cultural life, as the committee is considering this morning.

Mr. Robbie Sinnott

To respond to Mr. Kerr's proposal regarding section 39 organisations, it is clear from paragraph 13 of general comment No. 7 of the UNCRPD that service providers cannot be DPOs because of the possibility of a conflict of interest. That would be the case even if 100% of the members of a service provider were disabled. I remind the committee that there is also a difference between clients, service users and members. Even if 100% of board members or trustees were disabled, if the organisation concerned is a service provider, it cannot be a DPO according to the UNCRPD.

I am very happy to be here at the committee. It is my second time to attend. I am not a member and I am here to deputise for Deputy John Paul Phelan. I keep an eye on the work of the committee, which is very valuable. The engagement I have listened to this morning is extremely valuable. I certainly look forward to what the committee will do on the recommendations, particularly in the area Ms Conway has spoken about. There is a major problem in terms of people who happen to be artists losing State supports if they get a short-term contract. I look forward to seeing what the committee's recommendations on this will be. I acknowledge this and the importance of the work the committee has to do on coming up with a recommendation and, hopefully, looking at international best practice. There is absolutely no reason we cannot set international best practice by coming up with a set of proposals that can overcome this problem. Clearly we want people to be creative and to nurture, develop and achieve in their creative space.

Ms Daffy has presented very well here today. I am a member of the board of directors of the Cara organisation. I am very proud of the work it does in supporting, advocating and encouraging sport organisations to be more inclusive, more open, more accommodating and more supportive of people with disabilities living active lives, feeling included, getting and being involved and being facilitated in getting involved. I have a question for Ms Daffy. I listened to her contribution and reflected on the national development plan announced on Monday in Cork. There is €65 million additional funding for sport. Many clubs throughout the country are excellent in their initiatives and in what they do to make themselves accessible. Others are not so good. I would like to hear Ms Daffy's views on whether the Government should increase the requirements for clubs that receive State funding, be it through sports capital grants or other forms of State supports. Should they engage in accessible training, such as access training, and making their facilities open and accessible physically and in terms of membership? Should this be a requirement of a club to get State funding? It is amazing how blocking funding opens doors.

Ms Niamh Daffy

I thank Senator Conway for his kind words on our organisation and what we are doing to advance and enhance opportunities for people with disabilities to lead active and healthy lifestyles. In my opening statement I mentioned that there has been a significant increase in commitments throughout the sport and physical activity sector on organisations opening their doors and providing opportunities for people with disabilities. There is still a long way to go to have a whole societal collaborative approach to this with regard to clubs in particular. Much has happened from a Government point of view right down to club level. The national sports policy highlights a commitment to reducing the gradient in the participation of people with disabilities in sport. Within this is a clear indicator and a commitment from the Department, Sport Ireland and the sports leadership group established to support the implementation of the national sports policy on how we can go about addressing the gaps that exist with regard to the participation of people with disabilities in sport and physical activity.

Some steps have been taken on grants and funding for these organisations, for example the sports capital programme. We have worked very closely with Sport Ireland on the sports capital programme to embed particular questions on inclusion and criteria for inclusion so that organisations availing of a grant need to look at their facilities and programmes to ensure they are inclusive of people with disabilities. Within this we also ask these organisations, and it is a stipulation within the criteria, that they sign up and commit to the sports inclusion disability charter. While they may not immediately be able to make major changes, they have committed to looking at their organisations to make them and their sports offerings more inclusive for people with disabilities. The grants run by Sport Ireland through the local sports partnerships and the national governing bodies also have inclusive criteria built in. The sports inclusion disability officers work very closely at local level with those clubs looking for additional funding. They also support them to make sure their organisations and club structures are inclusive of people with disabilities.

To answer Senator Conway's question honestly, there is a lot happening in this space. There probably needs to be more done on national grants that filter right down to club level. We see it happening in other Departments. Recently, the Department of Community and Rural Development embedded inclusion criteria into its outdoor infrastructure scheme. This allows us to work with organisations applying for the funding to ensure their outdoor facilities and infrastructure are inclusive of people with disabilities. This is something that is gaining momentum. A lot more still needs to be done but it certainly is being considered, from policy level right down to the grant schemes in place at present.

I have a quick follow-up question for Ms Daffy. She spoke about the charter. I remember when it was launched in Government Buildings two or three years ago. It has been signed up to by 1,500 organisation. What is this as a percentage of organisations? Is it more than 50%? Is it less than 50%? In her opening statement, Ms Daffy said she hopes the figure will increase.

Ms Niamh Daffy

I do not have an exact figure of the percentage of organisations. The charter is not just about clubs. We hope the charter is something that could be translated across many organisations that provide active and healthy lifestyles for all society. This would then transcend to opportunities for people with disabilities. The majority of organisations that have signed the charter are clubs, local sports partnerships and national governing bodies. Other organisations have also signed up to the charter, such as educational institutions. We continuously push the charter as core to our work. We will continue to do so as we roll out the programmes alongside Sport Ireland with the local sports partnerships and the national governing bodies. I will ask Mr. Doherty to comment because he works closely with the club structures.

Mr. Odhrán Doherty

It is difficult to put a percentage on it, to be quite honest. We look at it from a sectoral point of view. All of the local sports partnerships have signed the charter. This is 100% from that sector. A total of 30 of the national sports governing bodies have also signed the charter. This is approximately 50% of those funded by Sport Ireland. This is the type of figure we look at. With regard to specific governing bodies, more than 50% of Basketball Ireland clubs have signed the charter. Approximately 33% of Gymnastics Ireland's clubs have signed it. It is very difficult to give an overall figure of the national picture as a whole but we can put particular figures on each of the sectors. Some are ahead of others. We have work to do on leisure and fitness. More than 900 clubs throughout the country have signed the charter. This is a very small percentage of the overall number of sports clubs in the country. If we look at national governing bodies specifically, some of them have high figures but others have lower figures.

It is an ongoing process. The work that we do to highlight the charter through our training and education and the access programme we are running is leading to this increase. It has increased very rapidly over the past 12 months. We foresee a continuation of this growth over the coming years. The challenge for us then is to resource the clubs. They have taken the initial step to sign the charter and they will then need support to implement the charter positively within the organisation. This is something we also need to consider as an organisation. It is also ongoing for us.

Ms Isolde Ó Brolcháin Carmody

I have a few points to make on this. I work with a lot of community-based and voluntary-based organisations.

Blocking funding is extremely counterproductive when a small organisation is involved. As it is, many small organisations come up against grant systems whereby they must spend money before they can get money back. That does not help if an organisation has no money. Incentivisation is the way to go. A lot of clubs and businesses would be able to do much more in the context of accessibility if there was funding for making their premises, etc., accessible. There needs to be incentivisation rather than penalisation.

We need a per cent for accessibility scheme. The Per Cent for Art scheme, whereby any public infrastructure works must include public art, has been very successful and has really increased the presence of art in our everyday lives. Why can we not have a per cent for accessibility scheme where any public money going to any body for any purpose must have accessibility and inclusion built into it so that it is a prerequisite for all public money? As I have said previously, we are everywhere. We are not only in day services.

Huge amounts could be in invested in making every sports club and leisure centre in the country accessible, but if we cannot get out our own front doors, then those facilities are no use to us. I am in receipt of the personal assistance service. This is meant to facilitate me living independently. However, Louise's description of what it is like to live in an institution describes my everyday life. I do not have transport because I live in a rural area. There is no public transport. There is no motorised transport grant. I cannot get an accessible vehicle. I would need to pay a driver to get me anywhere. I get basic home care, which currently does not cover my needs because my needs change all the time. The personal assistance service needs to be taken out of the hands of the HSE, which is where it is the moment, because it really prohibits a person from using his or her personal assistant for work or social activities. How is this helping our inclusion? We need to have a much greater level of support for our independent lives, which will make sense of investing in making all of these facilities accessible.

I thank the witness.

I apologise for being late to the meeting. I was at another committee. I thank the previous speaker because the point she raised in respect of personal assistance hours and the need for assistance with the social side of life is often missed. I am happy that Ms Ó Brolcháin Carmody referred to it because it is so important.

I extend a welcome to each and every one of the witnesses. I thank them for their series of compelling and insightful contributions. We as a committee are very grateful to the witnesses for coming to share their experiences and expertise today.

My first question is to Mr. Sinnott from Voice of Vision Impairment, VVI. Will Mr Sinnott give examples of how VVI or other DPOs have been marginalised or ignored in consultations? Mr. Sinnott said that the DPCN does not comply with the State's obligations under Article 4.3 of the convention. Will Mr Sinnott go into more detail on that and, possibly, suggest a more DPO-friendly alternative? If the disability steering group is to guide the UNCRPD implementation plan and if DPOs are prioritised in positions on the steering group, would that be enough to safeguard the implementation and ensure it is in good hands?

Will Mr. Sinnott expand on his concerns regarding the potential for extra powers for local authorities in planning? What does he mean by accessible streetscapes? What is the current status as regards accessibility in the context of the right to vote?

I thank Ms Ó Brolcháin Carmody for giving us such an understanding of how demeaning the means testing is. It is a very crucial and important point. What would she see as the best alternative to means testing? Will Ms Ó Brolcháin Carmody also explain the position with regard to the DPO coalition?

I thank Deputy Wynne. Which of our witnesses would like to take questions first?

Mr. Robbie Sinnott

I would like to start, because there are so many questions. I thank Deputy Wynne for them because they are very important. I do not know which one to start with.

The issue on voting is referred to in my submission. I won a landmark High Court case against the State on voting, which is germane to the module in Article 29 and the right to political participation. We are with the Department working group at the moment. The Department of Housing, Local Government and Heritage has a franchise unit with a disability working group. There is only one DPO on that working group, which is VVI. The other members are two service providers, namely, the Irish Wheelchair Association and the Disability Federation Ireland. The National Disability Authority is also there. On our advice, the working group wants to extend to get one other DPO involved. How is it going to do this? It is not going to ask the DPOs if they want to join; it is going to go through the DPCN. I do not know how the DPCN is going to be able source it. There are 112 or 113 members, and six of them are DPOs. The NCBI is a member of this working group. It is also a member of the DPCN, as are the Irish Wheelchair Association and the Disability Federation of Ireland. These organisations would, conceivably, be influencing which DPOs go forward.

To dovetail into the other question, this is just an example of how the DPCN is completely and utterly inappropriate in terms of DPOs' rights. It certainly does not fulfil any of the obligations on the State, not even as a box-ticking exercise. The DPCN, in its footers, says that it is not a DPO space and that is not what it was set up to be. On consultation, priority must be given to the DPOs. The DPCN is not even doing that. Even if it did, it still would not suffice because it is not a DPO space. In New Zealand for example the equivalent model of our DPCN only involves DPOs. There are six national DPOs on the DPCN equivalent network in New Zealand: it is just them and the state. That is how it is. The service providers are involved in other ways. If the network recommends that certain service provisions are necessary, the state then goes to the service providers to ask how feasible this would be for them, and so on. That is a role that is envisaged.

The DPCN in Ireland comes from, more or less, the National Disability Authority report into DPOs, which was published in October 2020. It references the New Zealand model as being the best practice, but then in its putative list of DPOs at the end of one of the appendices, it gives almost every dog and devil in the disability industry in Ireland. Clearly, the National Disability Authority was very unclear as to what a DPO is. I am hoping our legal opinion has very much cleared this up, a copy of which we have sent to Dr. Aideen Hartney, the director of the National Disability Authority. I am hoping that we get some reasonable response on that. The National Disability Authority has to be accountable too. That authority has skin in the game and it is not neutral. The disabled people's organisations take up some of their space with regard to consultations and advice. It could be argued that the DPOs could take up all of their space and possibly should be controlling the National Disability Authority in what research it should be doing. This is how far-reaching the UNCRPD is. It does not just say that we as DPOs are in charge in terms of consultations but also that we should decide that the whole processes change also.

There were other questions. I was not able to make a list.

Deputy Wynne asked about voting. It is getting there but it is very slow and painstaking.

On the issue of transport and streetscapes, shared spaces are a real difficulty. If there is a segregated cycle space, for example, if it is segregated from the rest of the traffic, it means that anybody living nearby cannot be dropped off by taxi to their home. If the person is visually impaired and has a doctor's appointment at 33 Jones Street or wherever, he or she cannot be dropped off outside the doctor's surgery and must be dropped off 300 yards away or wherever the cycle lane allows.

Pedestrianisation is not good for vulnerable pedestrians, for example, people with osteoporosis and other bone conditions or those with pulmonary fibrosis. A HSE report from 2016 showed that 168,000 people find it hard to walk for more than 15 minutes. A lot of people could not even walk to the top of Grafton Street because it would take them 15 minutes to reach Brown Thomas. Access all areas is needed for cars. It does not have to be all the traffic and it does not have to mean congestion but access could cover blue badge holders and public transport, such as taxis and buses. Under Dublin City Council's proposal to the National Transport Authority in 2018, there would be no buses from Patrick Street right over to Pearse Street. The whole of the south part of Dublin city centre would not be accessible. Visually impaired people and those aged over 75 would not be able to get to the Oireachtas. Even if they could get a taxi, it could be very expensive. The committee has already heard about our levels of poverty, so that proposal is not fair either.

There are a lot of issues. Local authorities are following this agenda, which is a European style model. Nobody has ever asked "How do disabled people manage in Europe?" The answer is, "Not very well". The local authorities are not interested in that kind of research. The National Roads Authority, NRA, does not do surveys of vulnerable pedestrians. This year's report was the first time we were mentioned. For years, we have been asking for research into cyclist-pedestrian collisions but the NRA has no data and does not know.

Accessibility is a massive problem. Visually impaired and disabled people cannot get out to gigs or go to work. We cannot even do that. The new practice of placing stalls and so on in the middle of footpaths looks good but, again, it is not universal design, which is mandatory. We have a lot to teach and we are also learning all the time from our members. We are an intrinsic voice to any planning and we should not be ignored.

I was not able to make a list of Deputy Wynne's questions so I hope I have not missed out on any point.

We will go to Ms Ó Brolcháin Carmody next and then Mr. Sinnott. I ask them to refer back to any other points raised by Deputy Wynne.

Mr. Robbie Sinnott

I cannot see the points.

Ms Isolde Ó Brolcháin Carmody

Could we have a verbal reminder of the Deputy's points?

My question to Ms Ó Brolcháin Carmody was on what might be the best alternative to means testing. When she is finished I will raise further points with Mr. Sinnott.

Ms Isolde Ó Brolcháin Carmody

I thank the Deputy. I will put my spake in about accessible streetscapes. I am visually impaired and I use a guide dog. I also use a power chair. Quite often there is unnecessary conflict between the needs of visually impaired pedestrians and wheelchair users. I need tactile paving but I also need pavement cuts. I will give the committee an example. If I go outside my front door, I must immediately go onto the road because there is no pavement cut. There is actually no pavement opposite my house. I cannot get down to my local town without doing some off-roading. This can be a bit scary when I cannot see the traffic. It also means I take up a wider space that someone who is just using a wheelchair. I take up maybe double the space. With regard to street furniture, I do not know how many times over the years I have driven through traffic cones and sandwich boards which have fallen on my guide dogs. There needs to be much more creative thinking and much more involvement. Stop putting us into little boxes that these things are just for visually impaired people, wheelchair users or older people. There are all these complex intersections of needs that always need to be taken into account.

On the Deputy's question about means testing, the alternative is really a modified version of the universal basic income. A pilot scheme to provide artists with a universal basis income was introduced in response to the National Campaign for the Arts. Disabled artists could not avail of this scheme because it did not include guaranteeing the so-called secondary benefits, in other words, our right to housing and the full medical card. All of those things we depend on for basic survival would not have been guaranteed under that scheme. We need a version of a universal basic income where we have a basic level of supports which includes all the so-called secondary supports. If we are working, we would submit an annual tax return and whatever disability payment we are on would be disregarded when it comes to taxable income, but any income over and above basic needs would be taxable by Revenue. Ms Conway and I, and others in the DADA campaign, believe this is the simplest and most straightforward way.

I imagine that removing means testing and reviews from disability payments would save the Department a lot of money in administration. I do not know if anyone has figures for the costs of reviewing benefits versus how much money is recouped by finding supposed benefit fraud, cheats or whatever. The fact that this system is there is a constant reaffirmation of the ableist idea that we are lying about our disability. We are not believed and our assessment or need is not good enough. My proposal, and that put forward by DADA, is an alternative version of universal basic income, one which takes account of the extra supports and needs that we have as disabled people.

Mr. Robbie Sinnott

Deputy Wynne also asked about the DPO Coalition. The DPO Coalition's primary remit is to produce a shadow report into the UNCRPD. That report is very much under way. It does not quite have a representative role. That is not ultimately what it is about. Clearly, however, there is a space for information sharing. Since it is one of the funded members of the DPCN, it is an avenue for national DPOs to join the top table, so to speak. The DPO Coalition still accounts for a minority of the controlling members of DPCN. For the DPO Coalition, ultimately the shadow report is what it is about. We do not know if it will be around after the publication of the shadow report. Representation should be direct. All DPO Coalition members would welcome direct engagement regarding their own specific constituencies. There is no point in me trying to represent the specific needs of disabled women or wheelchair users, even though at least half of our members are women or wheelchair users. That is not our focus, however. It is important that direct engagement takes place, possibly using the New Zealand model.

I was asked for other examples of where the State has marginalised and ignored people. Between March and July of this year, we sent 20 or 25 emails to the disability policy unit of the Department of Children, Equality, Disability, Integration and Youth, citing examples of how we were being ignored. Not one of those emails was responded to or acknowledged in any way. The Department had actually asked us to send them in. That applies across the board, including in areas such as health and transport. We have an email from the National Transport Authority stating that the UN Convention on the Rights of Persons with Disabilities does not apply to it. It stated that it was waiting for the Department of Children, Equality, Disability, Integration and Youth to come back and guide it on how to do it and in the meantime, the convention does not apply to it. I could supply the committee with a copy of that email.

A number of speakers are offering and we will need to try to be as condensed as possible to get answers. I know that every point that is being made is valid and I am reluctant to try to curtail the discussion, but unfortunately we have a time constraint and need to finish by 12.30 p.m. I am trying to include every member because they have been patiently waiting since 9 a.m. this morning. I will call Deputy Canney next, after which we will go back to the witnesses. We will try to get everybody in before the meeting ends.

I thank all the witnesses for their contributions this morning. In order to try to help matters, I will not be asking any questions, but I will make some comments. Based on what the witnesses have said this morning, a few things stand out as matters the committee should be pursuing. Universal income for people with disabilities is very important. We should have a support in place for people with disabilities, full stop. I have come across cases where when somebody got married, their spouse's income was taken into account and they lost their disability allowance. It is totally wrong and we need to put in place a universal disability payment that is ring-fenced regardless of a person's circumstances.

Regarding artists and musicians and the supports for disabled people who are self-employed, I was struck by the comment by, I think, Ms Conway that employers are given supports to take on people with disabilities, but self-employed people do not get supports to help themselves. That is another area that the committee should follow up on.

I have said this repeatedly. A person with a disability was either born with it or may have lost a limb but irrespective of the circumstances, as Councillor Gabe Cronnelly would say, the limb will not grow back. The blindness of someone who is blind from birth will not change unless something exceptional happens and if that happens, everybody will be happy. Therefore, why must a person prove every time that they are an amputee or are blind? There is a ritual whereby they have to prove all these things. They need to get all the letters from doctors etc. That is something we need to stop, if I can put it that bluntly.

I have learned about the anomalies with the blind pension this morning. I will do more research on it and will be guided by the experiences outlined this morning on that.

Regarding club funding, I know many clubs that do great work for disabilities. They do it because they get funding after which they put things in place. We should be doing more of it and it should be measured. It is not just about having a disabled parking space or a piece of equipment in the playground for a child. We need to have a bit more than that and we need to be able to measure the outcomes.

Regarding a percentage of public works funding going towards having facilities accessible for disabilities, we need to ensure we do not make that percentage something that deals with disabilities and that is all. Whether it is a road, a house, a school or whatever, we need to ensure that everything that is built is designed for universal access. Regardless of anything else, we need to do that.

I have had some dealings with the personal assistance service. We need to look at that because the personal assistance service is too inflexible. The Department's approach seems to be that people are doing something wrong and trying to con it out of something. We need to reverse that and take on board the witnesses' comments.

As the Chairman has said, everything the witnesses say is important to us because it informs us. I am delighted that Senator Conway joined the meeting this morning. The witnesses' input will help us, help the Minister and help the Department to make changes for the benefit of all. We need to continue with this. At a certain juncture we will need to make our submissions on this module and force it through as best we can. With the witnesses help we will do so. No doubt, we will be back to them again because they all have great insights and what they have said to us is very clear. I compliment them. As I have no questions, I will pass over to the other members. I have something to do at 12 noon and will be leaving the meeting but this is no disrespect to anybody. I thank the witnesses sincerely for their time and input this morning.

I thank the members for their co-operation online. We are trying to facilitate everybody given the conflicts in time that people have. I call Senator Seery Kearney, after which we will go back to the witnesses.

I thank Senator Higgins and Deputy Cairns for yielding their speaking slot to me. I thank the witnesses for their powerful contributions. My resolution every week is that we come into the public meeting and I then go into the Seanad and call for a debate on the matters raised at this committee because it is really important and valuable.

My first question is for Mr. Kerr. This committee exists to ensure the implementation of the Convention on the Rights of Persons with Disabilities across all Government and State. He raised very good criteria for looking for value for money. Perhaps the committee should write to the Committee of Public Accounts to ask if the criteria are fit for purpose in light of the points that have been made here this morning. That is something we should talk about.

I was going to ask Mr. Sinnott to speak about his High Court case and outline what he would like the committee to do to advance the ability to vote and access to exercising the franchise.

Ms Emilie Conway spoke about transcendence. Senator Conway attended this meeting and for me, he is the embodiment of transcendence. Most of the rest of us stand up and hold notes as we contribute to debates in the Seanad. Senator Conway stands up and speaks off the top of his head with passion, knowing his subject matter extremely well. He is the embodiment of ability and transcendence and maybe calls out a prejudice or a stereotype.

This brings me to my main point. Everything that Ms Conway, Ms Ó Brolcháin Carmody and Ms Daffy have said has been pointing to ableist privilege.

We need a national conversation on the latter. If I use the word "racism", everybody understands exactly what I mean unless they choose to be ignorant or particularly right-wing. Everybody understands what it means. We, as a society, have made a seismic shift away from what was the case when I was a child in the context of things that are acceptable to say or even to think. This is to be welcomed. Everybody knows this. This clearly has not happened with regard to disabilities. It clearly has not happened in so far as that we content ourselves with the Equal Status Act, the Disability Act and the Employment Equality Act. We think the nine protected categories ensure that people have access to make a complaint where they are discriminated against but this does not call out the pervasive ableist discrimination in everything. This is the massive message I am getting from the meeting this morning. This is what I will call for in the Seanad.

We need to find a way to change the culture. We need to change everything in a way. The micromanagement of people with visual impairment is horrific. I am appalled listening to it. In previous engagements, I have been appalled by what I have heard about life experiences. This is all the more reason policy and everything should be through the life experience of those we are targeting and not from the top down. That is enough from my soap box except that I would welcome hearing what the witnesses have to say. In my role on this committee and personally, I am committed to tackling ableist privilege and to making sure we do this and make it a theme of our raison d'être as a committee and otherwise.

Mr. Gerry Kerr

I thank Senator Seery Kearney. She gets it. She has spoken very eloquently on the seismic change she is looking for and the philosophical change required in how we approach it.

As to the question on value for money, it would be remiss of me not to mention autism and personal assistance. We have mentioned the latter. There was a capacity review by the HSE this year. It reckons it needs an extra €1 billion to fulfil its plans. If we were to have an increase in the number of personal assistants, we would be speaking about something like €10 million or €12 million. It would be money well spent if the committee could push for this sort of expansion.

With regard to autism my heart goes out to people. A number of my friends have children with autism and it seems that, particularly during Covid, children with autism have been so neglected in Ireland unless people have plenty of money to buy an assessment, buy physiotherapy, buy speech therapy or buy occupational therapy. I do not want to sound extreme but what happens to a lot of children is that they do not begin to get services until late primary school. By the time they are going to secondary school they are dysfunctional and they drop out. In contrast, if we could put whatever extra money is available into early services, it would mean these children will face a life where they can have jobs, they can have relationships and they can be productive and happy. Perhaps they would not end up in residential settings for intellectually disabled people. I will push this one with Senator Seery Kearney also.

Mr. Robbie Sinnott

With regard to voting, we are slowly getting there. It is very slow but sure. On a good day things work for some people. Ultimately, what it comes down to is the system. In New South Wales in Australia, there is a system of online voting for visually impaired people. Estonia also has online voting. This is not to be confused with e-voting and the terrible debacle with old technology from 20 years ago. This is online voting. In Estonia, it applies in all elections. People have two weeks to vote and they can change their minds within that time. They do not have to vote online and they can vote in person at the polling station if they wish. Ultimately this is what it comes down to. It would mean people in rural Ireland would not have to depend on somebody to bring them to the polling station, perhaps putting pressure on them as to how they vote. There is no verifiability. I have seen this go on in rural Ireland with people with disabilities. I thank Senator Seery Kearney for the question. Ultimately, online voting should be investigated but there are no moves on it and the Department is not looking at it in the short term or the long term.

Ms Emilie Conway

I thank Senator Seery Kearney for raising ableism. I am sure we are all familiar with the Einstein quote that we cannot solve a problem with the same kind of thinking that creates it. In a way we could sum up all of this as the exclusion of disabled people. It is non-disabled thinking that has created all of these problems for us. We absolutely need to be integrated from the bottom up. The National Campaign for the Arts in its pre-budget submission included an action plan for addressing these issues along with the idea of a universal basic income for disabled artists. We were pleased to see the Music and Entertainment Association of Ireland has put in place a pilot scheme. We are very supportive of it.

When we spoke about looking outside of Ireland, I recalled that either Australia or New Zealand has a form of auspicing whereby if a disabled artist gets an award, it is not given to the person. The organisation trickles out the money in accordance with how it is able to keep supports. We are against this because it upholds structures of poverty for disabled people as people earn only €140 a week. It is also infantilising, which is a very common practice with disabled people. They do not have their own money. We think of Brittany Spears. They are not allowed to have it and it is just given to them when it is decided. It is also a cap on artistic creativity because it tells people they can earn only €140 multiplied by 52, which is approximately €7,000. They could only do work to the value of €7,000 a year. Do we really want to say to disabled artists who may be having a prolific year that they are not allowed to create work because they will not be supported because of an auspicing plan. I want to put that to bed straight away.

I recommend that there are quotas in organisations to get disabled people in at every level, particularly in the arts. In a way, art is almost like the conscience of a culture. We process everything that is happening and put it back out in creative work. It is very important to have quotas. I suggest there should be a funded position in every organisation on equality, diversity and inclusion. A disabled person with living experience should constantly inform the organisation. Accessibility is a living experience. As we probably see here, experiences of accessibility are unequal. They are unequal throughout the country. Living in Dublin might be better than in Cork. It is so unequal and unregulated that we need to have a disabled person or two in every organisation that can inform equality, diversity and inclusion with living experience. In the arts I would say it needs to be an artist and that it is done through process-led creative work in the organisation.

The committee received a submission from Aideen Howard on public sector duty. She has been very supportive of all of our work. At present, disabled artists are the lowest demographic to interact with the Arts Council in respect of funding. This is because of the problems we have raised whereby if they get an award, they lose. State organisations are not fulfilling their public sector duty and cannot do so until these barriers are removed.

If people are lucky in love they will lose their supports. From an artistic point of view, chances are an artist will meet another artist and this is so precarious. No artist wants to feel all of their finances and living will be looked into and examined by the Department of Social Protection and that their girlfriend or boyfriend will become a dependant.

It is a romance killer. That should be looked at.

Ms Isolde Ó Brolcháin Carmody

I wish to add to what Mr. Sinnott was saying about voting rights and give an example of how Governments responded in the past to cases of structural inequality for disabled people. Mr. Sinnott was successful in his case and there are now templates with Braille and large print at polling stations. However, there is none at my polling station because my polling station is my home. Once again, the response was to do the bare minimum of what was required under the ruling.

Another example is that of someone I knew who took a case to the Equality Authority, when we still had one, over the age cut-off for the motorised transport grant. Loads of us are waiting with bated breath to turn 66 when our disability magically disappears and we become just an older person and no longer a disabled person. I cannot wait to reach that point. Returning to my point, it was shown that the motorised transport grant and the cut-off at the age of 66 was discrimination based on age. The Government withdrew the motorised transport grant, supposedly to reconfigure it. I think that was eight years ago and there has still been no replacement for that service. Those of us living in rural Ireland are disproportionately affected by that.

If we were to bring in an online voting system, which is good practice in respect of accessibility, we would need good broadband in every home. We do not have that. I am speaking via a mobile Internet connection because that is the only broadband I can access. Technology must be provided to disabled people who need it. I am attending this meeting using an iPad paid for by my local arts office as part of my artistic work. I cannot function without it and no funding is provided to get appropriate technology. Matters such as this cannot be dealt with piecemeal or one scheme at a time. Everything that is done must be sweeping, cross-departmental and from the ground up.

Ms Ó Brolcháin Carmody stated that we probably had not heard of her. However, she wrote a powerful piece in The Irish Times in May which was accompanied by a powerful photograph.

Mr. Odhrán Doherty

In sport, we have many issues around what would again be called ableist privilege. It is the non-visibility of people with disabilities in positions that are not playing roles, such as governance and coaching posts and at the level of committees as well. Sport is delivered, in the main, by people without disabilities. There is a huge gap in the knowledge and awareness of what people with disabilities could bring to those roles.

Much of our work is done through the voices of people with disabilities, for example, the development of the charter and our training and education activities. There have been changes in the culture and behaviours of sporting organisations, but there is a long way to go. Additional role models are required. Pathways must also be created for people with disabilities to take up roles in non-playing capacities at governance level, and in coaching and volunteering as well. We are working on that in our inclusive volunteer programmes and by upskilling boards. We have to work on this issue, which Sport Ireland has also identified as a gap. The more people with disabilities that we can get involved in such roles, the faster the culture will begin to change.

I thank all the witnesses. I have so many questions so I will try to bundle them. In the previous Oireachtas, I was a member of the Joint Committee on Social Protection, Community and Rural Development and the Islands. We talked about some of the gaps and problems in the social protection system in our committee's pre-budget submission. More have emerged from today's testimony. We welcome those insights from the witnesses.

On the key areas, we spoke about the impact of the means testing of the disability payment and the need to move away from it. One thing we have pushed for is the long-overdue cost of disability report. We have been waiting for it but we know what it is going to tell us. It will tell us that there is a huge cost associated with disability that is additional to the starting point of the costs of living a full life and of being able to participate in society in all the ways that everybody should be able to participate. Disabled people are faced with that additional cost burden. The removal of the means test would be the preferred option.

Another option, or a stepping stone in that direction, would be the idea of a larger income disregard which would match the costs of disability. That would be a start and it is one of the tools available. That is a key aspect. The wording or framing of the blind pension and other payments is often disempowering. It is determining that because people have these needs, they must stay in this space. It almost signals to people to stay out of society.

I am interested in comments the witnesses might have on the intersection of those payments and the actual pension age. One of the other issues we have found with older people with a disability is that once they get to retirement age, their disability and associated needs can become invisible. In a previous life, long ago now, I was part of the Older and Bolder organisation and used to work on creativity in later life. This is a topic I feel passionate about. There should at least be an acknowledgement of the need for the supports that are disappearing when people reach pension age.

I am interested in this broad area, and the measure that is going to come centre stage is the proposed new universal basic income for artists, which is about to be piloted. What kinds of things should be looking out for? Should we be trying to ensure a universal basic income does not impact on disability payments? Should it focus on addressing one of the areas of intersection, namely, that artists tend to get money in a clump, if the witnesses know what I mean? Artists may have a low income for a time and then receive a lump sum from a bursary or other funding. I ask for comment on the intersection of that with means testing for the disability payment? What we have now is a pilot and we want to ensure it works for artists who have a disability, as well as other artists.

We know there has been a change regarding studying for doctorates. Is it DADA's view that there should be a similar exclusion of public commissions and awards and awards from the Arts Council? Much like with PhDs, these awards allow people to develop and further their work and careers. That is a clear ask the committee could push for.

I ask the witnesses to comment on the individualisation of social protection payments. It is a major issue in respect of gender equality and financial independence. It is important that people's partners should not be included in means tests. People should be individually assessed.

I was interested as well in what Mr. Kerr said about governance and ownership. We have this battle to try to ensure that the public sector duty in respect of equality and human rights is being delivered upon. There is another level where when the State is procuring services these services should follow through on the public duty towards equality and human rights. A power dynamic is at work here. If the buildings, premises and facilities benefiting from capital infrastructure investment are owned by private or voluntary bodies, it can sometimes be harder to press for such requirements and for the same standards to be met. I ask Mr. Kerr to comment on that issue of governance and ownership.

It is something that is very much to the fore at present with regard to the national maternity hospital. I am very interested in that question and I believe those are issues that we will have to examine as part of that seismic change to ensure there is accountability and that citizens and residents with a disability are centre stage.

With regard to the advocacy support service, I very interested in what was said about the Assisted Decision-Making (Capacity) Act. We have had a great deal of debate on that and on decision support services. The view the committee has had is that these are very important, but they should not cause a delay in the implementation of the optional protocol. Do the witnesses have any comments or thoughts on that? These are often presented as something we have to work on and that this is the reason we cannot get the optional protocol in place, but our sense is that the optional protocol will certainly add to the urgency of the delivery of the assisted decision-making supports.

I would appreciate hearing anything the witnesses have to say specifically on congregated settings and the discretion and space for cultural, political and social participation. I am still struck by my memory of visiting a residential care home when I was working with Older and Bolder. The nearby town was holding a big festival and everybody was out and wearing pink. I believe it was in aid of breast cancer. A huge event was taking place but there was no visibility of that in the residential care centre. There was no expectation that this community event would involve the people from the residential care centre or that they would be participants, contributors or performers at the events. That really struck me and I found it quite chilling.

I am sorry, Senator-----

Will the witnesses comment on personal assistants, PAs, for those who are in congregated or residential settings so that, regardless of where they are living and how their basic needs are being met, they have that discretion?

The last matter is the assistive technology passport and the idea that the assistive technology attaches to the person. At present, it is something one applies for in respect of a specific job, but for many artists, in particular, and those who might be in creative industries the jobs change so regularly that this mechanism does not work. Perhaps witnesses could comment on the assistive technology.

We are up against the clock and every member has valid questions for the witnesses. I will take Deputy Cairns next and then we will refer back to the witnesses to reflect on the questions and comments of both Senator Higgins and Deputy Cairns.

I thank the witnesses for appearing before the committee today. Unfortunately, due to the limited time, I will only ask a few of the questions I wished to ask. The first is for Ms Loughlin who represents the National Advocacy Service for People with Disabilities. The service strongly aligns with the UN Convention on the Rights of Persons with Disabilities by assisting people to realise their rights. Ms Loughlin highlighted the work of the service and the many advocacy interventions it made last year. I presume that is only the tip of the iceberg and that there are many other cases that need more supports. From Ms Loughlin's experience, is there a need to expand the service to help more people with disabilities realise their rights? She also highlighted cases of financial control and people being prevented from getting the vaccine. Aside from the commencement of the Assisted Decision-Making (Capacity) Act, what else can we do to reduce the number of cases of those forms of control and abuse?

I thank Mr. Sinnott for his work on highlighting issues with the State's interpretation of the UN Convention on the Rights of Persons with Disabilities. He stated that the disability participation and consultation network does not comply with Article 4.3 obligations. What needs to happen with the DPCN to change this? I realise Mr. Sinnott answered a lot of this in response to questions from Deputy Wynne, but, as a summary point, do we need another structure altogether? In Mr. Sinnott's opening statement he highlighted the State's obligation to provide sustainable core institutional funding to DPOs while ensuring the independence of their advocacy agendas. Could he elaborate on that point and its significance?

I thank Ms Conway for brightening our morning with singing and also for laying out the cold realities of being an artist with a disability and the way the State puts barriers in place for her and others. She explained how many of the issues relate to the ableist privilege in public bodies. Senator Seery Kearney elaborated on that and Ms Conway did, too, in her response. Ms Conway spoke about quotas at every level. I wonder if, in addressing issues, that originates from the lack of people with disabilities in the decision-making process in Departments as well. Is that a focal point to start with?

I will leave it at that because other people wish to speak as well.

Deputy Murnane O'Connor is our last speaker and then we will turn to the witnesses.

Many of my questions have been asked, particularly with regard to the arts. Access is a big issue that I am working on in my area. That is so important. Little things can make such a difference, so it is always about highlighting them and making sure that representatives in this committee take on board the issues the witnesses have raised today and do what we can to make changes. We must highlight them, as we do with the witnesses. These changes can happen. I realise everything boils down to funding, but we have a very good Minister of State in Deputy Rabbitte. It is important that we bring back all the concerns of the witnesses. As I said previously, communication will be key here, as well as working with all the different groups. The representatives of Cara Sports Inclusion Ireland have spoken, and I have been working with different groups in my constituency of Carlow-Kilkenny. We need to look at changes there. That is an issue we can address, and I have been speaking to groups in connection with that.

My constituency has one of the best train stations, but there was no wheelchair accessibility. That is unacceptable in 2021. It is nearly finished and ready to go, but people are fighting for what should be a given right. This is the issue. I know from listening to the witnesses that they are constantly trying to highlight things and battle for them, but they are getting there and we are going to be fully supportive of them. All of us working together on that will get them there.

Another matter was brought to my attention. The Covid-19 pandemic has affected all of us. Many people felt they were not getting out enough and they did not have many people calling. Naturally, with Covid we had to be very careful and mindful of our most vulnerable people. However, a lady called to my office and said to me, "My friend is getting €350 per week on the pandemic unemployment payment, but I am on the disability allowance and I only get €203 per week." She said it was unacceptable. She said, "I am not giving out about the PUP, but why are we on €203 per week with the disability allowance and yet the PUP is €350?". This is something that I had said previously was unacceptable. These are the issues. We have to make sure we do not have people living in poverty and that they are not having to scrimp every week to make payments. That is another issue we have to address. We must address the funding mechanism, the disability allowance and the invalidity allowance. There are major areas that we have to address.

My time is up and most of my questions were already put to the witnesses. However, I thank them for the information given today. It is always a learning day for members of the committee and, as a group, we are dedicated to working with all the witnesses.

I thank the last three speakers. Ms Suzy Byrne of the National Advocacy Service has not contributed heretofore so I will start with her. We have a few minutes more and we will try to get to all the witnesses who wish to speak. In addition, we would greatly appreciate if you could engage with us and send us answers on the points that have been raised by the members. It is only through your engagement with us that we can be empowered to try to do the right thing for you.

Ms Suzy Byrne

First, Senator Higgins asked about access to personal assistants for those living in residential settings in order to access cultural, social and community life.

That is an issue of which NAS advocates are very much aware in the context of the work we do with the people we support. It is often difficult for people who are in the traditional disability services and living in residential settings to have people and supports available to them so that they can engage and go to concerts or the cinema or for a pint. Those are the simple things that we often discuss with people we support. We check with them what sort of access they have to their local community, what they are interested in and how they are being supported to do that.

Members may be aware of the Wasted Lives report by the Ombudsman, which considered the issue of young people living in nursing homes. Their access to personal assistant services is extremely limited. There is the whole issue of being able to stay up late. It is about going out, having different times of going to bed and different activities, not doing the same thing every week but being able to plan and do different things that are of interest.

I also highlight this issue in the context of people who are not living in residential spaces. The assistance that is currently being given to people living in their community, such as at home with their families, only takes into account personal care needs, if they get any assistance at all. It does not consider engagement in their community, social lives, work, employment, education or the assistance that might be provided to them in terms of personal assistance or other types of support. The home help service, which many disabled people had to access because of the lack of access to PAs, is limited to personal care in one's own home. For many people, it does not even help them cook meals or do light household duties. That prevents disabled people having visitors to their home because they are ashamed of the state of their home. They may not have other supports that can help them undertake daily duties in their homes that are not confined to washing or personal care. That is a significant limitation on people.

Of course, there are many people whose needs are not being met. The NAS is aware of the extent of unmet need. There are people on waiting lists or who do not even know if they can get on a waiting list. Much of the work done by NAS advocates involves connecting people to their local communities and to the HSE, making applications and advocating for them to receive supports.

As regards the Assisted Decision-Making (Capacity) Act and the optional protocol, several issues have been identified as barriers to the protocol being put in place. We support all sections of the Act being commenced as soon as possible. It is really needed so that people can appoint others to assist them to make decisions. In addition, the guiding principles are very important. They are what inform NAS, its work and the work of advocates to make sure that people are being recognised in terms of their will and preference and the decisions they wish to make. Those decisions should have been made with them, not just for them. One of the things that has been clear during Covid is that there were many people who thought they could make decisions on behalf of disabled people. I refer to the whole area of next of kin in particular. There is no status for next of kin in this country. People with disabilities have the right to be viewed as decision makers. If they need assistance in making decisions, those decisions should be made with regard to their will and preference and not their best interests. That includes their right to go out and engage, vote and take part in public life, community and social spaces, as well as in society and public life generally.

The final point I wish to make relates to the universal issue of the cost of disability. There are many people paying significant charges to live in residential care, be that in disability services or in nursing homes. That leaves them with very limited income to pay for transport costs or other things. Reference was made to mobility benefit and the fact that as the mobility allowance motorised transport grant was stopped eight years ago, there is now a generation of younger people with disabilities who have no additional support with their transport costs and that is limiting their participation under Articles 29 and 30 of the UN Convention on the Rights of Persons with Disabilities.

I will hand over to Ms Loughlin to address any points I have not covered.

Ms Louise Loughlin

On the matter of congregated settings more broadly, Senator Higgins asked about the discretion, space or ability for people to participate in community life. The experience she had resonates very strongly with NAS. We have all had those experiences of working with people in residential services and finding that, even in 2021, people are still living in institutionalised settings that are not part of the community. They are in a village but not in a village and are not integrated into the community. Part of our work is to try to support people to have access to community life in whichever way they wish to express it. It is important not to lose sight of people who are still living in those types of settings.

We look forward to the commencement of the Assisted Decision-Making (Capacity) Act and the decision support service. I understand it is due to be commenced in June next year. There is a significant cultural change that still has to happen and one of the issues in that regard is how staff and others in settings will support people with disabilities to access their rights under the Act. That is one of the significant challenges. It is complex legislation and requires significant integration across multiple Departments and State agencies. It is really important that, come June next year, we do not lose sight of supporting people to understand that they may have a right to seek discharge from wardship more easily or to set up one of the decision supporter arrangements that might make a difference. Ms Byrne's point relating to the vaccine highlighted for us the ongoing misapprehension about the non-existence of the right of a next of kin to make decisions for a person with a disability, how important that is and how it impinges on the cultural, political and community life that the committee is currently considering.

As regards Deputy Cairns's question in respect of other issues of interest, I refer to ensuring that access to advocacy is available to people and is adequately resourced. Under the current system, there is a requirement in the HIQA regulations for residential services to demonstrate an access to advocacy but there is no clear definition of what that actually looks like or what it means.

A related piece to consider in the context of the vaccine issues and the finance issues that were mentioned is that advocacy is critical in picking up matters that might otherwise be missed. Another part of that is safeguarding. The HSE currently has an updated safeguarding policy for adults who may be in vulnerable situations but the policy has not yet been implemented. I know that is something the HSE is keen to do but it is complex because it is now going to go beyond disability services and move into mental health and community settings, which is really critical but it does require support for the HSE to enable it to deliver on that.

There is time for only one more witness to come in. I call Mr. Kerr. My apologies to the witnesses who will not have time to contribute again. I thank them for their engagement.

Mr. Gerry Kerr

I thank the Chairman, as well as Senator Higgins and Deputies Murnane O'Connor and Cairns. I would love to have a pen and paper I could write with just to help me remember all these points. Instead of that, I will finish off with three images that may answer some of the questions of members or address their concerns.

There are three people. The first is a woman with sight loss living alone in a small bedsit. What would change her life is a half hour of home help per week, a person to read her mail, check several things for her and help her out.

The second vision I have is of a young woman with sight loss who was very much socially isolated. Culture helped her in the sense that an organisation with which I am involved started a project called Sightless Cinema. It allowed people with visual impairments to make up their own radio dramas with the help of a facilitator, edit them and put them on in a cinema in the dark with full sound. They finished off by having a small performance.

That would be financed through the public participation networks, PPNs, and local authorities. I hope Senator Higgins does not mind me mentioning her father starting a necklace of community theatres around the country. They were the organisations that came to help. They changed that person's life from a cultural point of view.

My final point is that a young politician, a councillor, who I know, like many members of the committee, is really impassioned by what he wants to do. He has to survive on €17,000 a year as a local councillor. He will not have a chance of ever getting a house, a stable income, a loan from a bank or a future. I know it is a lot to ask and that from the beginning of the State, we have had volunteer councillors, but if someone is a full-time councillor who has gone into politics as a profession, which is a noble profession, there should be a proper, decent wage. If people want to do it part-time, then something could be worked out.

I thank the Chair for indulging me. I am involved in an organisation which, 38 years ago, started trying to bring about cures for people with visual disabilities. About 30 years ago, we funded a project in Trinity which discovered the first genes involved in someone like me going blind. After 30 years of funding and campaigning, we are at a stage where there is a drug called Luxturna which can be injected into the eyes of a child, which will replace the genes and will maintain a person's sight for life. We need systemic medical changes at various hospitals. This goes to Senator Higgins' point about governance and ownership. Various hospitals operate as individual silos without any national register or database with which we can establish clinical trials or a cost-benefit analysis of which drugs to reinforce.

I thank Mr. Kerr. All that is left for me is to humbly thank the witnesses, including Ms Conway, Ms Daffy, Mr. Doherty, Mr. Sinnott, Mr. Kerr, Ms Loughlin, Ms Byrne and Ms Ó Brolcháin for their contribution to our meeting this morning. We are enriched by the evidence presented. Each meeting gives us a greater indication of the challenges that lie ahead. We have to be empowered by their evidence. We now have an extra hour for meetings, having had only two hours under the Covid restrictions. I do not know how we would have condensed this meeting into two hours. We had three hours this morning and it still was not enough.

I ask the witnesses to continue their work, to rattle the cage about where they are coming from, and to empower us to try to make a better society. I thank everyone for their evidence. We look forward to further engagement with them in our deliberations. I thank members for their accommodation of each other this morning with time-switching and so on. It is appreciated. I thank our back-up team, who we are grateful for.

If people had supplementary points that they did not get to make, they are always welcome in writing. We discuss them in private session and they feed into our work.

Absolutely. It would be appreciated if there is any other information that the witnesses think is relevant and should be added to our evidence. Please feel free to send it to us. It will be discussed in the process.

The joint committee adjourned at 12.34 p.m. until 9 a.m. on Thursday, 14 October 2021.