Joint Committee on Disability Matters díospóireacht -
Wednesday, 11 Nov 2020

National Disability Inclusion Strategy: Discussion (Resumed)

Chairman

The purpose of this meeting is to discuss the progress on the national disability inclusion strategy and the UN Convention on the Rights of Persons with Disabilities, UNCRPD. On behalf of the committee, I extend a warm welcome to the witnesses from the National Disability Authority, Dr. Aideen Hartney, director, and Dr. Rosalyn Tamming, interim head of policy, public affairs and research; and from the Irish Human Rights and Equality Commission, Ms Sinéad Gibney, chief commissioner, and Dr. Rosaleen McDonagh, commission member and chair of the commission’s disability advisory committee.

Witnesses are directed that only evidence connected with the subject matter of these proceedings is to be given and they 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. Members are reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise or make charges against a person outside the Houses or an official either by name or in such a way as to make him or her identifiable.

I invite Ms Gibney to make her opening statement.

Ms Sinéad Gibney

I thank the Chair and the members of the committee for the invitation to appear today alongside my colleague, Dr. Rosaleen McDonagh, who chairs our disability advisory committee. The Irish Human Rights and Equality Commission is Ireland’s independent national human rights institution and national equality body. The commission is also the independent monitoring mechanism designate for Ireland under the UN Convention on the Rights of Persons with Disabilities, UNCRPD. We are supported in that work by a disability advisory committee, chaired by Dr. McDonagh and composed of a diverse group of people with lived experience of disability.

From the outset, I want to make clear why it is critical that the State, and the committee members, as legislators, consider disability matters through the lens of human rights and equality, and why it is critical to see disability as universal, in terms of rights that belong to all of us, rather than disability as the exception to be managed. Put simply, the rights afforded by our Constitution and by the laws made in this House are only universal if every person is able to realise them. In our engagement with the committee today, we will largely focus on gaps in legislation, policy or programmes to address the UNCRPD, and how Ireland can best implement this ground-breaking international convention. Committee members will be aware that the commission has made a written submission on the committee's proposed terms of reference and work programme. My comments here will reflect at some points the recommendations in that submission.

A key task for this committee will be monitoring Ireland’s implementation of the UNCRPD. As such, the work of the committee should be guided by the principles which underpin the UNCRPD. One of the most significant of these principles is the direct participation of people with disabilities. Until more people with disabilities are represented in public life, this needs to be core to how this committee, and the Oireachtas, undertakes their work. This participation must also account for the diversity of persons with disabilities, in particular to ensure that the voices of those with intersectional experience of disability, including women, children, older people, Travellers and Roma, LGBT, black and ethnic minority people, are invited, heard and understood.

As the commission previously set out in its evidence to the Special Committee on Covid-19 Response, the pandemic has served to highlight in sharp relief existing weaknesses in the legislative architecture which should underpin the rights of people with disabilities. These gaps are multiple and large, and include the non-commencement and delayed reform of enacted legislation, for example, the Assisted Decision-Making (Capacity) Act 2015 and the Mental Health Act 2001. These delays are incredibly frustrating for people with disabilities, who have fought hard for this legislative change but who continue to experience daily barriers to the realisation of their basic rights in this prolonged phase of inaction. Other outstanding legislation, if enacted, would see the State better equipped to protect the rights of people with disabilities in the future, for example, the inspection of places of detention Bill, which would ratify the Optional Protocol to the Convention against Torture, OPCAT, and establish the national preventative mechanism, and the Disability (Miscellaneous Provisions) Bill, which would formally establish the commission as the independent monitoring mechanism for the UNCRPD. In addition, considerable preparation is required for comprehensive implementation of the Irish Sign Language Act 2017 when it comes into force at the end of 2020. Further significant legislation, such as the Education for Persons with Special Educational Needs, EPSEN, Act 2004 and the Disability Act 2005, predate the UNCRPD. A review of this legislation is required to consider what reform is needed in order to bring it up to date and into alignment with the UNCRPD.

Allied to this is the need to assess the adequacy and effectiveness of the State’s newly-established consultation and participation network and other participation mechanisms. As previously mentioned, in the absence of people with disabilities being adequately represented in national and local government, the establishment of a permanent participation mechanism that effectively realises the State’s obligations under Article 4(3) of the UNCRPD on an ongoing basis is critical.

The pandemic has raised the threat for many people with disabilities of being reinstitutionalised in their own homes. The rights-based approach enshrined in the UNCRPD is the antithesis of the old medical or charitable models of disability. Now, more than ever, it is important to maintain that focus and not to drift backwards. In this context, I want to raise the commission’s concerns regarding the diminished access to many services for people with disabilities since the onset of the pandemic. On my point about rights being universal, this exceptional moment we find ourselves in cannot mean that the rights of people with disabilities to participate in society, and to simply live their lives, are postponed indefinitely.

I described the UN convention as groundbreaking and it really is. I wish the committee every success in its work towards the full and unqualified implementation of the UN convention, including the optional protocol. We, as the Irish Human Rights and Equality Commission, stand ready to assist in any way we can. To make Ireland a disability-friendly country, this is not the only work that is needed. Those among us who have disabilities experience daily stigma and discrimination, often benign but no less harmful. These attitudinal issues make it impossible to enjoy full participation in the economic, social, political and cultural life to which all Irish citizens should have access. The UN convention is a huge step on this journey towards an Ireland where all people, with or without a disability, can flourish equally.

Dr. Aideen Hartney

The National Disability Authority, NDA, thanks the Chairman and members of the Joint Committee on Disability Matters for the opportunity to make a presentation on the progress being made under the national disability inclusion strategy. The NDA was established in 2000 to provide independent and evidence-informed advice to the Minister on matters of policy and practice relevant to the lives of persons with disabilities, and was given added functions to operate a centre for excellence in universal design from 2007. Universal design promotes the design of the built environment, products, services and ICT so they can be accessed, understood and used by everyone, regardless of age, size, ability or disability.

Our role means we cover a very wide range of policy areas. Our work includes research, advice, guidelines, codes of practice and input to standards, and is also informed by the experiences and views of persons with disabilities captured in surveys and consultation exercises. We will be assigned an additional function in relation to the provision of information and statistics to the Irish Human Rights and Equality Commission, IHREC, to support that body in its role as the independent monitoring mechanism for the UNCRPD.

The NDA has a role in supporting the implementation of the national disability inclusion strategy through the delivery of its own committed actions, as well as the development of annual independent assessments of progress. Since the strategy began, we have published two such assessments, with the third due in early 2021. To prepare our assessments, the NDA considers biannual reports prepared by Departments on progress against their commitments under the strategy, but also our broader research and policy work, informed by the lived experience of persons with disabilities and their family members or carers. The NDA has also developed a suite of indicators to show the overall outcomes associated with implementation of the strategy. They are measured through robust and reliable data sources, such as CSO datasets or data captured by public bodies. Our first report against these indicators was published earlier this year.

The national disability inclusion strategy is one of the mechanisms to drive progressive realisation of the goals of the UNCRPD. A key commitment within the first half of the strategy’s lifetime was the ratification of the UNCRPD in Ireland. The NDA recognises that further work is required to facilitate ratification of the optional protocol. The NDA has also welcomed the publication of key reports during the strategy to guide policy development and have a meaningful impact on the lives of persons with disabilities, including the Make Work Pay report, the report of the task force on personalised budgets, the ongoing implementation of the comprehensive employment strategy, the pilot programme for the school inclusion model and the ongoing implementation and review of the access and inclusion model.

The NDA has also identified areas where further progress is required in order to deliver the national disability inclusion strategy and to realise the goals of the UNCRPD. These include commencement of the Assisted Decision-Making (Capacity) Act 2015, development of protection of liberty legislation, reform of the Mental Health Act 2001, passage of the Disability (Miscellaneous Provisions) Bill 2016, commencement of the Irish Sign Language Act 2017 and full commencement of the Education for Persons with Special Educational Needs Act 2004.

The NDA also notes that progress in the implementation of some actions within the national disability inclusion strategy has been slower than anticipated, and advises further focus on these areas, including continued work to implement the Time to Move on from Congregated Settings policy, improvements in the provision of statutory assessments of need, as per Part 2 of the Disability Act, and continued focus on the actions committed under the comprehensive employment strategy. Last year’s mid-term review of the strategy allowed the opportunity to take stock of actions which needed to be revised, and to include new actions in recognition of emerging priorities, informed by consultation with persons with disabilities and their families.

There are challenges to the implementation of some of the range of policies and programmes in relation to disability. In the NDA's work, we play a role in identifying these challenges and working with stakeholders to consider potential solutions, informed by evidence. Some of the cross-cutting challenges include the absence of dedicated funding to transition to new models of service, challenges in supporting structured cross-departmental working, as many barriers can only be addressed through a whole-of-system approach, and challenges in gathering and accessing harmonised data on disability.

As Ireland prepares to deliver its first state party report to the UN monitoring committee, the NDA is working to collect and analyse data on a number of the articles of the UNCRPD that address significant aspects of the lives of persons with disabilities, such as education, employment and independent living. We also advise that it will be important to consider what ongoing implementation of the UNCRPD looks like, in particular as the current national disability inclusion strategy comes to an end in 2021. The NDA notes the commitment in the revised national disability inclusion strategy to develop an overall implementation plan for the UNCRPD and separate departmental plans. It will be critical that Departments and their agencies translate the aims of the strategy into specific and measurable action plans for implementation at local level, in keeping with the Government policy of mainstreaming.

We would like to take this opportunity to highlight the extent to which the Covid-19 pandemic has impacted the lives of persons with disabilities, including through increased unemployment for those working in sectors vulnerable to restrictions, the closure or reduced capacity of day and respite services, gaps in educational provision for children with disabilities, reduced or delayed access to non-Covid health interventions and increased isolation for persons with disabilities. We recognise that the pandemic has brought additional challenges and delays to the implementation of some commitments under the national disability inclusion strategy. However, there has also been opportunities to learn and explore new ways of working that could inform future directions for disability services and supports.

The NDA advises the importance of a whole-of-government approach to disability, as encapsulated by the national disability inclusion strategy. While there may be some gaps in the areas covered by the strategy, and while progress on some actions has been slower than anticipated, it nevertheless serves as a mechanism to co-ordinate cross-government activity, and a means of focusing attention on this key area. This, in turn, will enable Ireland to continue on its journey of progressive realisation of the goals of the UNCRPD. We will continue to provide support for implementation through the provision of evidence-informed advice and guidance and would be happy to provide more detail on any area summarised within this statement.

Senator Mary Seery Kearney

I thank the witnesses for their presentations and opening remarks and for all of the work they do all of the time and not just what is represented here today. I very much value that we should be moving at all times, and at all times measuring our progress for an inclusive society that is about empowerment and equality. I expect that the achievement of equality means positive discrimination in areas and positive action. I see this coming from a background of employment law prior to being here. How do we ensure everyone has access to employment, access to maintaining their employment and access to the supports they require once they are there? I am aware of people in full-time employment who need to be supported to stay there. Those who are in long-term precarious employment wonder about security of tenure and all of the potential for poverty that surrounds this. There is the potential at all times of falling into poverty. This is an area of priority for me. In ensuring we improve pathways to employment I am interested in the recommendations of the witnesses to the committee and their initial thoughts on these matters.

Dr. Rosaleen McDonagh

Before I respond to the questions, members might indulge me. I feel strongly that Ireland has had a stagnant history in relation to disabled people. Our rights have been slow to be fulfilled. We are not just recipients of services.

I am glad the Senator mentioned employment because we are also contributors to the economy, business, arts and culture. Without the full application of the United Nations Convention on the Rights of Persons with Disabilities, UNCRPD, including the optional protocols, employment for 90% of disabled people is more of a wish than a reality. One should look at the progress around women in education and employment, gay people and the way the removal of stigma and shame has allowed marginalised people to move forward. Indeed, I am delighted that Senator Eileen Flynn, a Traveller, has managed to find employment in the Oireachtas. I say again that, in the current climate, human rights are about recognising the gaps in legislation but also acknowledging that Covid-19 has absolutely, like my colleague from the NDA said, affected our lives. This is particularly so in rural Ireland and particularly for Travellers and Roma, who are living in deplorable conditions. The idea of education or employment is far away from our everyday reality.

In the current climate around children's educational and therapeutic needs, there is a real fear from parents. I am an aunt of several young people with disabilities of varying degrees and I have already seen regression in people who need specific educational interventions.

I will provide one more input and this is the reason I am here today. Covid-19 has meant there is a high propensity or possibility of violence against disabled people. We have seen it in the context of gender-based violence and I hear from my colleagues, my networks and my friends that this is a serious issue. We are not just talking about enclosed spaces; we are talking about family homes, institutions, nursing homes and other communal areas. It is not just physical violence. It is financial and it is threats of corrosion of rights around food and daily choices. I hope the committee realises what it is like out there for us. I thank the committee.

Ms Sinéad Gibney

I thank Senator Seery Kearney for the question. The rates of employment for people with disabilities are shockingly low in Ireland. The 2008 European Commission report found that Ireland has one of the lowest employment rates for people with disabilities in the EU at 26%, compared to 48% in the EU in 2017, and one of the highest gaps between people with and without disabilities of 45%. People are twice as likely to be in poverty and half as likely to be in work if they have a disability in this country.

I direct members towards Articles 19 and 27 of the CRPD in particular. I agree with Dr. McDonagh that if one embraces the CRPD and follows it to the letter, one will see a mindset shift in one's own approach. That is what is needed, namely, a move away from one-term exceptionalism where things have to be fixed towards a mindset whereby the inherent dignity and the independence of people with disabilities is respected and that universal application of rights is undertaken to allow everybody to contribute effectively to society, including those with disabilities.

Chairman

The attitude in society has to change.

Senator Erin McGreehan

The witnesses are welcome and I thank them for their contributions. The implementation of the CRPD is something that screams common sense. As a sister of someone with a disability, I have seen at first hand how she is put down at every step. Senator Seery Kearney mentioned employment rights and every step along the way, my sister is disabled and she is very abled in every sense of the word.

This is transformative and we need as a committee to look at each article. As a new Member of the Oireachtas and of this committee, the witnesses' submissions really helped me to focus on what we can do and need to do in this committee. I really appreciate that input from policy professionals.

Dr. McDonagh touched on many things in her comments. I also have heard that people who are frustrated think that because they are frustrated with the whole situation, they can take out their frustration on vulnerable people who are disabled. There is incredible injustice in this country regarding people with disabilities so I thank Dr. McDonagh for her contribution.

I have a general question. On a note which just came from the Seanad, we had the Minister of State, Deputy Anne Rabbitte, speaking on disability day services and her priorities in trying to get them reopened and increasing capacity. She also noted that by January, she hopes to start the implementation of the optional protocol, so we got some sort of timeline from her. I think her officials were pulling her back but she said they hope to start the implementation from January, so there was some positive news today.

An issue for me is employment. From the witnesses' point of view, is there one thing from a policy direction - not even a legislative direction - that we can push here which would have a quick effect on increasing numbers of people with disabilities in employment? I have ideas but I am not a policy professional. In transport, is there an immediate policy we could work on in that area?

Dr. Aideen Hartney

I thank Senator McGreehan. In addressing this, I will be able to address some of the points raised by Senator Seery Kearney as well. Employment, unfortunately, is one of those areas where a whole-of-system approach is required so it is hard to isolate a single solution. We are quite fortunate in Ireland in having a comprehensive employment strategy with a suite of actions committed to by Departments and public bodies to address this area. It begins from early on by raising expectations that persons with disabilities can have employment and enjoy their jobs, right through to the education system and effective career guidance and to managing transitions between education and further education, training and employment.

We advise that all of those areas need attention. However, one of the critical areas the NDA has advised on previously is the importance of employer engagement in the form of giving employers the support, advice and information they need to feel confident they can employ persons with disabilities. This is about ensuring they understand and can see the business case for employing people with disabilities but also that they are tooled up or have capacity built to provide reasonable accommodations. We have research and guidance ourselves in this area but we know that IHREC itself will be developing a code of practice for employers and we will have some guidance in this area with some of those practical supports as well. One other area I will highlight before finishing is the need for a co-ordinated national programme of supported employment for people who might need additional supports in employment, be it a job coach or assistance with the employer liaison piece. While some service providers are providing these supports locally or on an ad hoc basis, there is certainly no consistency of approach and no national support for same. A number of Departments have committed to a policy in supported employment and we advise on the importance of moving to implementation as early as possible in that regard.

Dr. Rosaleen McDonagh

The attitude of the State and how it does business needs to change. Employment, or any other area of our lives, cannot be a silo. At the moment, from childhood to employment there seems to be various strands of policy that do not join up. The fundamental reason we are here is the ratification of the UNCRPD, which acknowledges independent living. If a person does not live in a safe, comfortable way with supports, then how can he or she access education or employment opportunities? I would add that in my experience, we cannot continue this paternal attitude to disabled people whereby we preface every policy or statement with "supported". That should be a built-in reality and we must treat people as independent, autonomous agents of their own lives.

Deputy Violet-Anne Wynne

I thank the representatives for their submissions and contributions which have been most informative. It is ironic that we have been for some time in an age where information is at our fingertips but at the same time we are frustrated by the long periods of time which have been wasted, such as the 11 years it took for the ratification of the convention.

On the optional protocol, it is good to know and promising that the Minister of State, Deputy Rabbitte, announced today that she intends to begin implementation in January. IHREC mentioned a roadmap to that and I am interested in hearing further comment on it. I tried to press the Minister, Deputy O'Gorman, at our meeting last week but unfortunately it is not due to commence until after the first report. I seek some more practical information on a roadmap because it is very useful and is something that could be brought forward as well. I am happy that the topics which have been mentioned, especially by Dr. McDonagh, were raised so early in the meeting. Access for persons with disabilities in County Clare is very difficult because a lot of the county is rural. Consequently, transport and even access to housing are a major issue there. Do the witnesses have an input regarding congregated settings? At present, I know of five young adults who are in nursing homes and should not be. They do not want to be there and in a way they are confined to their rooms from morning to night because they cannot access the treatments or even activities because of their disabilities. I wanted to mention that because it is of deep concern within the county and I am trying my best to work with the agencies to see if a solution can be found.

The witnesses touched on the attitudinal issues we have in this country. That is hugely important because information and awareness is great but the question of how we tackle the attitudinal issues we have in this country remains. There is also the question of how we tackle invisible disabilities and how we break through on that. Do the representatives have any ideas on those matters?

Ms Sinéad Gibney

On the optional protocol, it is absolutely very encouraging to hear there is a start date for implementation. Overall, the commission is concerned about the State's record on ratifying and reporting on human rights treaties, not just the CRPD but all of the treaties. Ireland was the last member state to ratify the UNCRPD and we are one of only six EU states which had yet to ratify the optional protocol at the end of 2019. The State is routinely late in reporting; for example, the State combined its fifth to ninth reports under the UN International Convention on the Elimination of All Forms of Racial Discrimination when reporting in 2018, a gap of nearly ten years. Therefore, in seeking a roadmap I would ask for detail, detailed phases, plans and deadlines for implementation. The problem we have is when these deadlines are pushed out. For example, the report due in April is now to come out by the end of this year. It is not just the report that is delayed but the lives of those people whose rights continue to be unrealisable because of this delay. As such, it is not just the report that is being delayed and it is important that when those roadmaps are set out that this is clearly established and that those people and the Department are held to the roadmap they set out. As I said, it is very encouraging to hear that but it is very important to hold bodies to account.

On the other points the Deputy mentioned on the attitudinal piece, I emphasise again that the committee's experience of monitoring the implementation of the UNCRPD is something members themselves should use as a learning opportunity. Members should become exemplars in terms of their own attitudes to people with disabilities and to disability itself. Members will then start to see that they will develop the language, ideas and attitudes to start to change from here outwards. The committee should, in particular, be looking to implement ways to put into effect Article 4(3) of the UNCRPD, which allows for effective participation, which should then become the norm across the Oireachtas. There is no reason for this to be the only committee engaging with people with disabilities and fully facilitating them to have their voice heard. That is one thing I would say is really important and the committee should just get stuck into the convention itself. I have a dog-eared copy of the Irish Human Rights and Equality Commission Act 2014, the founding legislation for our body, that I carry with me everywhere I go and I feel committee members should all carry dog-eared copies of the CRPD with them. They should all really get to know it, get stuck into it and understand it. That attitudinal piece will then come through.

Dr. Rosaleen McDonagh

I echo Ms Gibney but when we are talking about roadmaps, there is something profound in realising we have no disabled people who are senior civil servants. We have no disabled people who are senior policymakers. At least as far as I am aware, we have no openly out and proud disabled Senators or Deputies.

That in itself is where the end of the roadmap should be. We are nowhere near to that and nowhere near to where we should be. It is worrying that we do not have advocates in senior positions in all Departments. I go back to my opening remarks about the situation with disability being stagnant. It is frightfully worrying.

Dr. Rosalyn Tamming

With regard to attitudes, the National Disability Authority does a national public attitudes to disability survey every five years and we are due to do our next one in 2022, so we will be planning for that next year. It shows ups and downs in how attitudes change. What we noticed between 2011 and 2016 was that attitudes improved in 2016. We attributed the dip to the recession and its impact on people's attitudes to disability. It will be interesting to see what the effects of Covid are. Some of the actions we take to try to improve attitudes include an annual art competition for national school children to encourage discussion and awareness about disability. There are some other mechanisms to do that.

The NDA is supportive of the optional protocol. I have a word of caution that since 2006, when the UN Convention on the Rights of Persons with Disabilities was brought in, there has only been one investigation of all the European countries. It will not be a panacea. If somebody in Ireland submits a complaint, in a way, we have failed. We need to address and try to improve our systems so that nobody needs to use that optional protocol. The NDA has a monitoring role in the code of practice on accessibility of public services and information. We have started to do that in the transport sector, which came up earlier. We are trying to improve that system and roll out that monitoring system to other areas of the public sector.

Dr. Rosaleen McDonagh

With respect, I do not need a survey to tell people about the discrimination hundreds of disabled Irish people experience every day. If one looks at the statistics relating to employment, accommodation and independent living, there are the answers about the attitudes around disability. They are attitudes of stigma, shame and ableism. It is a bit unfair to suggest that we do not operationalise the optional protocol. At the moment, people's lives are at risk and we are not able to do anything. If one was more connected and heard the voices of people who have lived the reality of disability, they would not be slow in telling one how the attitudes are.

Dr. Rosalyn Tamming

I said that we are supportive of the optional protocol. I take Dr. McDonagh's point. It is important that we can measure progression.

Dr. Rosaleen McDonagh

What do we do in the meantime when people are being abused and fundamental human rights are being eroded? We have had decades of hanging around, waiting, with committee after committee. I have had enough. Too many of us are living unfulfilled, unsafe lives.

Chairman

I thank the witnesses. Senator Higgins is next. She is joining us through a video link.

Senator Alice-Mary Higgins

I thank all the witnesses. The optional protocol has been mentioned. I hope that we will have ambition as a committee and drive a wider transformation in all aspects of Irish society. One of our early functions can be as a ticking clock around the optional protocol and suites of legislation. I was struck that there is much legislation that needs to be revised or that is already on the table and is not being progressed, and that needs to be dealt with.

The witnesses mentioned the Irish Human Rights and Equality Commission's function as an independent monitoring mechanism for the Convention on the Rights of Persons with Disabilities needs itself to be put in place with that disability Bill, so moving ahead with that legislation is important.

I am aware that the Mental Health Act 2001 is extremely out of date and not fit for purpose to be compatible with the UN Convention on the Rights of Persons with Disabilities. Do the witnesses have comments on the Mental Health Act?

The NDA spoke about commencing the Assisted Decision-Making (Capacity) Act 2015. There are questions about whether it is adequate and if it needs to be amended and improved.

Regarding the mental health issue, there have been real concerns about the lack of proper statutory independent advocacy services, as was promised under action 60 of the national disability inclusion strategy for adults and children with mental health concerns in hospitals.

The other key area that I wanted to focus on is article 19, on living independently and being included in the community. I have strong views on being included in the community. The witnesses know that I am strongly supportive of the Community Participation (Disability) (Miscellaneous Provisions) Bill that was before the last Seanad. On living independently, I know the NDA has monitored the move away from congregated settings, but it seems to have been monitoring moving to smaller units of ten persons or less. What progress is happening not just in moving from larger to smaller congregated settings, but to actual independent living and supporting that? In terms of any comments on the Rebuilding Ireland strategy and the action plan for housing, is that properly and fully engaging with the need for more independent living options for those with a disability? I note that the NDA commented on universal design. Is it satisfied with the level of engagement on universal design in that strategy?

I know that there have been issues with accessibility of public services in the past when services were being procured. This arose with regard to transport. Will the witnesses comment on procurement and the importance of public duty, and equality and human rights carrying forward into the area of procurement?

Arising from what Dr. McDonagh said about abuse, are there any views about adult safeguarding legislation? I am conscious of the rise of domestic abuse, elder abuse and abuse targeted towards those with a disability in a climate with less public activity, such as with the Covid pandemic.

Dr. Aideen Hartney

I thank the Senator for those questions and areas of focus. We agree that the Mental Health Act is overdue for reform. Our understanding is that heads of Bill are currently under review, so hopefully that process will accelerate. There are a number of actions related to mental health committed to in the national disability inclusion strategy. To date, the NDA has found that reporting on progress has not been as detailed as might be hoped. We have suggested that it might be useful to have a thematic meeting of the national disability inclusion strategy steering group chaired by the Minister of State, Deputy Rabbitte, so that there can be more detailed interrogation of those actions and progress on them.

There are some amendments to the Assisted Decision-Making (Capacity) Act working their way through the system.

The NDA has developed codes of practice to facilitate the implementation of the legislation and we have transferred those draft codes to the director of the decision support service. Again, it is about offering practical guidance to all sectors and groups that might be impacted by the legislation. We understand the codes will be issued for public consultation shortly. We very much look forward to progress in that regard.

Senator Higgins mentioned the review we are carrying out on the costs and benefits of new models of service in terms of moving away from congregated settings. Our research is focusing on units of four or less, as per the policy Time to Move on from Congregated Settings. We are aware and accept that there are settings that are not in line with that policy and that have between five and nine persons but we have examined the transformative effect of a move to the community. The research will be published by the end of the year. It is pointing to very positive outcomes for people with disabilities when they are moved out of a congregated setting and supported within the community. The HSE, which is implementing the policy, agrees with our research finding pointing to a continuum of change. It is hoped that if people now moving into homes with three or four are supported and capacity is built over time, bearing in mind that many people have been in settings for decades, those people will in a few years reach a point where they could move to living independently in the community in a unit for one person or more, if that is what they choose.

Universal design is an important aspect of public procurement. It is a concept in respect of which we promote and advise at all times to see it come through.

That was only a whistle-stop tour of some of the areas on which the Senator touched but I would be more than happy to go into the detail or engage further in that respect.

Ms Sinéad Gibney

I might just touch on the legislative gaps. I will give a catch-all response on this matter and on the public sector duty. Dr. McDonagh may wish to comment on independent living and adult safeguarding.

On the legislative gaps, we have hammered home the message time and again. We have clearly identified where the legislative gaps are. What is needed is not a departure but progress on legislation and policy to give effect to the Convention on the Rights of Persons with Disabilities. That is what this committee must oversee. The ticking clock image is appropriate in that the legislation is on the books and needs to be enacted.

Some Members of the Houses may see that some of the legislation we have touched on is quite recent and ask whether we really need to review it. The CRPD will shift the lens and the approach to disability so much that Members will see immediately that some of the legislation is obsolete. Therefore, it is important to examine thoroughly the book of legislation and make sure it is all fit for purpose under the CRPD.

The Senator is a great champion of the public sector duty, and I am aware that she has done a lot of work in the procurement space. The public sector equality and human rights duty has a great part to play in bringing about change within the public sector, particularly in respect of the topics we have already touched on, such as access to public services like transport and access to employment. It is really interesting to see how we can apply it in the area of procurement. This is being done in the Scottish jurisdiction, whereby the public sector duty has been used for procurement in the public sector to inform a more balanced approach to procurement that does not just take account of value for money but also the human rights and equality record of the provider or contractor. It can positively reward contractors and businesses with good records that are contracted by the public services.

Dr. Rosaleen McDonagh

It is lovely to see Senator Higgins. To echo Ms Gibney, would any of the members want to be in a congregated setting with eight or nine people not of their choosing? I have lived in those places. One is too many to share with, let alone eight or nine. We have not really made any progress in that area. The concept of independent living has been really reduced, the thinking being that people should be thrown somewhere in the middle of nowhere and let survive. I am sorry but that is what it is. Many people with all kinds of disabilities do not have support by way of adequate cover.

On the broader context, various supports, including in respect of language interpretation, need to be in place. Independent living is not just about a building; it is more about a person's choice to live life in a way that is appropriate to him or her. Again, I refer to my own community. Disabled and deaf Travellers are currently living on a site with no water or appropriate sanitisation facilities, let alone access. The current concept is far removed from that of our legislators. To go back to what Ms Gibney said regarding silos, we cannot have ad hoc independent living notions for some of us. If there is to be independent living, it should be for all of us and it should start in childhood, with diagnosis and educational supports, and extend all the way up. That has not happened.

Deputy Jennifer Murnane O'Connor

It is so important that we listen to the concerns and deliver on them. Covid-19, in particular, has been very hard on people with disabilities as services have been cut. Availing of services and going to work are part of one's life and routine so it is important that we realise the hard time people have gone through. It is important that we make sure all the services are up and running again at full capacity as soon as possible.

Transport, including buses, was spoken about. This came up before. We need to ensure that we deliver in this regard. The Minister of State, Deputy Rabbitte, was before the committee last week and she spoke about the funding available. There is a lot of funding available and we must ensure we deliver with it because there are huge challenges. Whether it is through providing housing, independent living or access to an old building for a wheelchair user, we need to ensure we have policies on the small things in life. We need to consider reform. We need to make sure that when we are delivering here, we are listening to all the concerns. Awareness is so important. It is not until a family member or another person one knows is affected that one becomes more aware of the issues that arise. Communication and awareness will be key. We need to consider research and guidelines. We need to determine what we can do to improve access and living conditions and to deliver a service needed by people with disabilities. It is our duty to do that.

On listening to the discussion, I thought of families, in particular. They may be fighting for carers or supports they should automatically get.

Everyone is affected, and we have a duty of care to everyone. We need to deliver on that.

I was glad to see the point made that issues specific to the rights of women with disability and children with disability need to be looked at. That is something we need to look at seriously. It is something we need to work on. There can be major changes. All of us can make changes. This committee, with all of us working together, can achieve that. We need to do that. I want to say well done to everyone. I am listening to all the concerns.

The Mental Health Act 2001 was mentioned. That really needs to be addressed. Many people have gone through hard times. We need to ensure the Mental Health Act 2001 is addressed as it is out of date. This is achievable and we need to do it. All of us here will deliver.

We are all committed to giving the best quality of life and the best help we can to people who are probably more vulnerable and who need more help. We need to deliver that. I was listening today and what I heard puts things in context. We need to ensure that we improve the proper services and deliver, whether through employment, independent living, access or whatever. We need to do that. I am delighted that I can feel that I am listening. I know that I can work - all the committee members will work - to ensure we achieve as much as we can for the sector.

Dr. Rosaleen McDonagh

First of all, before Covid-19 we were in a bad way. Many young people with disabilities have been confined in their homes. That is not a small thing in life. They are wasting away there. Lots of disabled children are still living segregated lives. We all know - at least I know as a Traveller - of the impact of segregated systems. It delays the potential of all of us as individuals. Again, if the UNCRPD and the optional protocol were operational, as the Minister of State, Deputy Rabbitte, said they would be, all those things would change rapidly.

Dr. Aideen Hartney

I totally understand the frustration of people with disabilities and their families who are living this experience and believe there is no need for a survey or research to give life to that. However, we are all familiar with the cliché that if it does not get measured, it does not get done. That is why we believe ongoing research and monitoring is important in driving change. While the pace of change might not be as fast as people would hope or as transformative, at least monitoring, research and guidance move us on a path of incremental change. This means, hopefully, that we can get to the shared goals and aims in the end.

Dr. Rosaleen McDonagh

The material evidence is already in place. I am sorry - I disagree.

Ms Sinéad Gibney

I wish to echo Dr. McDonagh's point. We have heard this from other members of our disability advisory committee. The normal that was in place before was not good enough anyway. I see Covid-19 as an absolute turning point. A crisis of this size will change society. I believe the mindset of this committee must be on what is built from here on. In fact, the Oireachtas in its totality needs to think about how we can build a society that is better for everyone after Covid. It has exposed many of the weaknesses and issues in our society in so many different areas, especially the inequalities that we have in this society. It also offers an opportunity for change. I believe it is a once-in-a-lifetime opportunity for the legislators to grab.

Dr. Rosaleen McDonagh

It would be remiss of me not to mention gender, as Deputy Murnane O'Connor has done. There is much talk of unconscious bias. The lived experience of many women with disability is that men are often favoured. Their experience becomes the norm instead of more gender-neutral policy-driven legislation.

Our lives are not one-dimensional. We have gender, ethnicity and sexuality. All of these things come into play. We also have socioeconomic and educational disadvantage. These all play out in the lives of disabled people in the form of discrimination, sexism, racism, poverty, lack of access and adverse outcomes. We do not live one-dimensional lives.

Deputy Emer Higgins

I wish to pick up on two things said by Ms Gibney and Dr. McDonagh. I also wish to follow up on a point made by my colleague, Senator Mary Seery Kearney. I will then ask a question of Dr. Tamming.

I will start with my question for Dr. Tamming. I am looking for more information about the public attitude survey that the NDA is planning for 2022 and how it will be carried out. I am conscious that we are postponing the census. I am hopeful that this survey can go ahead as planned despite Covid.

One of the interesting points Ms Gibney made was that this should not be the only committee that has people who have disabilities coming before it as a matter of routine. I fully agree with that. Along with some of my colleagues, including Deputy Murnane O'Connor and Senator Seery Kearney, I sit on the Joint Committee on Housing, Local Government and Heritage. After what Senator Higgins and Dr. McDonagh have said, I am happy to recommend that we have people with disability before the housing committee to talk to us about accessible housing, housing adaptation and the independent housing needs for people with disability. The last point has been well explained today.

I fully appreciate the points made by Dr. McDonagh around the need for more people with disability to reach the higher ranks in public life. I am sure the work she is doing is not only breaking down barriers and silos but inspiring people around her and the next generation of people with disability as well. Dr. McDonagh said she does not believe that she has disability advocates in senior roles, but I want to say that she does. She has advocates in this room. Every Deputy and Senator here today is an advocate for people with disabilities. We are all committed to ending the policy stagnation that Dr. McDonagh spoke so passionately about.

In my last job before I became a Deputy I was in charge of the diversity and inclusion strategy for a multinational corporation. One of the best things I was ever involved in was the creation of internships for people with intellectual disability. When those internships became permanent jobs for people, there was nothing more fulfilling. There is incredible work going on in third level education for people with disability. It will open up career opportunities and life paths for people. That is something I want to build on and something I want to help progress through this committee.

Dr. Rosaleen McDonagh

I really want to bring to the committee a clear message on justifying attitudes. We have done this. We have talked about progress for over 30 years. We tried to explain how we experienced racism. We were always called upon to prove it. I believe that same rhetoric is being used now in finding out the attitude towards disabled people. We know it and we live it. It is absolutely transparent in our public policy, employment rates, health status and in how many of us are in sheltered accommodation who should not be there. Given the limited success of the UNCRPD we should no longer call upon disabled people to prove that ableism is out there.

It is there. It is in the universities, employment and everywhere. We do not need any more money to be spent on surveys. They may tell politicians and the public something but they do not tell disabled people anything we do not already know or experience.

Ms Sinéad Gibney

I will respond to the comment about committees, and I thank Deputy Higgins. One of the things that we have consistently called for since 2016 is an actual Oireachtas committee on human rights, equality and diversity, which is something that I cannot neglect the opportunity to plug. It is important to have lived experience, but the establishment of a committee would allow the Oireachtas to identify well in advance these issues as they arise. It would allow for proper participation and engagement with people. I realise that the emergency legislation that was put in place in response to Covid happened in a very quick timeframe, but those kinds of mechanisms being in place would allow the Oireachtas to have that consultation and proofing built in, similar to the equality budgeting that we see in development. Those kinds of mechanisms mean that these problems do not become bigger problems.

We have developed the disability advisory committee with a wonderful group of people with lived experience. As a human rights and equality body of this country, we still have a lot to learn. Everybody has a lot to learn. The members will learn from really embracing Article 4(3), on this committee and every committee in the Oireachtas, from really listening to people with lived experience and making sure that the voices of people with disabilities, and indeed of all the other minorities who we work on behalf of, are heard and understood.

Dr. Rosalyn Tamming

Since Covid-19, a lot of research has moved to the online space by using technology such as videoconferencing, and it is actually proving very successful. By 2022, I would be hopeful we could maintain a face-to-face interview, but if we had to switch, there are ways and means to do so. There are some limitations but it is still very possible.

Deputy Holly Cairns

I want to keep some time for answers, so a very quick, huge, big thank you to all of the witnesses for their contributions and submissions today. They have been so informative and helpful.

On the issue of surveys and guidelines and all these things over and over again, there is a real understandable frustration with these things when, like Dr. McDonagh has said, we do not need them to know how people with disabilities in Ireland are discriminated against, because it is very clear. As has been mentioned, there is not one single Member of the Houses of the Oireachtas who has disabilities. As has been said, all of these problems existed before Covid but this has really highlighted them. For resources to be going into things that we already know, oftentimes, as a society, we have made the mistake of telling people what is best for them without asking them. Those resources could be going into things that perhaps may result in them being better spent. As a committee, I hope we do not follow suit.

In every question we come back to the emphasis on and importance of ratifying the optional protocol. It seems to be the thing that we absolutely need to do, noting that we are one of six EU countries not to have done that. Are there barriers that any of the witnesses are aware of to ratification of that or is it a matter of keeping the pressure on the individual Departments? Any information on that would be fantastic.

In the submissions it was stressed that there was a need for direct participation by people with disabilities on this committee and other committees. That is fantastic. In today's interaction, it is not only ineffective but also exclusionary for many of the people who we hope to work with. Having previously worked in the disability sector, I know we need more proactive approaches to involve people meaningfully. Could anybody give us direction or suggest people we could talk to to adapt our methods to make them more effective? I would especially like a response from Dr. McDonagh, if that is okay, but also from everybody else.

Dr. Rosaleen McDonagh

If the members do not mind, I need a moment to catch my breath. I love the Deputy's questions about wasted resources on stuff that we already know.

Ms Sinéad Gibney

On the optional protocol, it is up to this committee to keep the pressure up. We will be keeping the pressure up.

To make the committee aware, as the independent monitoring mechanism designate, we are prepared and ready, and part of that has been the establishment and implementation of our disability advisory committee. That committee has been going through the CRPD article by article with in-depth exploration of what that looks like. It is just a question, I would argue, of keeping that pressure on.

In terms of the participation piece, again it is in the convention. Really it is about opening up the doors and being open. As many women are represented on this committee here, they are very much aware of the pathway to politics for women and the barriers that I am sure that they have experienced barriers on an individual level and, as a gender, that we have experienced.

The way I see it, as somebody who is in a position of influence, I am here because of the privileges that I hold and I see it as my right and obligation, in the work that I do, to open the doors for people who do not have those privileges. That is how members need to see it and what they need to do.

Dr. McDonagh mentioned unconscious bias. The single most effective way to combat unconscious bias is exposure to the groups whom one holds that bias towards. If a person has not worked closely with someone with a disability, if he or she has not been around and had to facilitate somebody who has a disability, that person simply cannot know. That really is what it is about. There is a level of humility that everybody in this room will have to take on in really exposing themselves to the voices of those people who have the lived experience. That is the spirit I would encourage members to take on, particularly around participation.

Dr. Aideen Hartney

I agree with Ms Gibney about the barriers to ratification of the optional protocol. Our understanding is that the Minister for Children, Equality, Disability, Integration and Youth, Deputy O'Gorman, wants to go through the first reporting cycle. Where there are amendments or adjustments to Ireland's procedures to be made then they can all be made at the one time. There are aspects of the Disability (Miscellaneous Provisions) Bill that should address some of those things. The Government's preferred approach is to have everything in place before we ratify the optional protocol, but we would advise that prompt attention be given to it.

In terms of approaches for greater inclusiveness, it would remiss of me if I did not plug universal design. The universal design of procedures, policies, premises and communication styles will help to ensure that situations are created so that people with disabilities can make an input and join processes in a way that accommodates their various needs. Again, there is guidance and toolkits.

The Department of Children, Equality, Disability, Integration and Youth is establishing the participation network. While the first duty of that network may be to consult on the State party report, we would urge that it becomes a long-standing mechanism and that it is not just for that Department to interact with but for all committees and all branches of Government and public bodies to interact with that network so that it hears directly from people with disabilities about the issues that impact on them.

Dr. Rosalyn Tamming

The National Disability Authority, NDA, is the secretariat for the disabilities stakeholders group, which is a group of people with disabilities and people from representative organisations. They are appointed by the Minister but they are very embedded in the monitoring process of the national disability inclusion strategy. They sit on all of the disability consultative committees within the Departments which are responsible for monitoring the strategy actioned within those Departments, and they sit on the steering group that is chaired by the Minister. There is already a lot of integration and there could be and always can be more, but that is a good step that has been taken.

The Deputy sought recommendations and we could probably supply her with lots of recommendations of people to talk to. Specifically on intellectual disabilities, I do not know if the committee is inviting Professor Mary McCarron, Trinity Centre for Ageing and Intellectual Disability, but she would be one person.

We can follow up and give the committee several recommendations on that if members wish.

Dr. Rosaleen McDonagh

I thank the committee for indulging me. I am doing a great deal of talking but it seems reasonable, given that I have a lived reality. That said, in order to contribute to the committee's analysis, I ask us all to reflect on the fact that Ireland has an appalling record and relationship with disabled people. I am thinking of the Ryan report, disabled children and all the issues with the mother and baby homes. Many women with learning disabilities were shoved into the homes. Those of us who were not adopted were usually disabled. In more recent times, there has been the awful experience of women living in Áras Attracta. All those issues have subsided in the minds of politicians and in mainstream Ireland, but for disabled people, those memories and realities go on each day that the optional protocol is delayed.

We also need a shift in our language and to acknowledge that ableism is a form of discrimination that we experience. Ableism has been a tool in how legislation relating to disabled people is written and how we think about disabled people. We see it in the media and on our national airwaves, so we need a much more dynamic approach with a stronger focus on human rights. Other than family members, if any, how many disabled people sat beside the members of the committee when they were sitting their leaving certificate or their finals in college? How many disabled people were on the panel interviewing them for their first jobs? That is very telling.

Chairman

Five remaining members wish to contribute but, unfortunately, the two-hour rule applies. With the powerful contributions we are hearing, we could be here for two days and it is very important to hear them at the outset of our work as a committee. I just wanted to bring that to the attention of members.

Deputy Pauline Tully

I thank all our guests for their contributions. I found them very engaging, especially that of Dr. McDonagh. She made the point, also made by Ms Gibney, that by speaking to people with disabilities, rather than somebody representing them, we will get a much clearer picture of what is needed. That is so important. We were talking earlier about inviting guests to our meetings in the coming weeks. It is important that we hear from disabled persons' organisations. As somebody said to me during the week, it is really important to have an organisation of disabled people rather than one for disabled people.

Many speakers mentioned a change in mindset, which is absolutely needed for all of us. There are many standards and various items of legislation, but in many cases they are not enacted, regulated or monitored. The Disability Act has been in place since 2005 and there are various regulations for buildings, but there is no guarantee that buildings are accessible. The Irish Wheelchair Association carried out a survey that found that 77% of respondents still felt that certain buildings were inaccessible. Online systems and technology are used more and more frequently, never more so than during Covid, but it does not suit everybody to use an online system. Someone who has a visual impairment told me they needed to use the phone but people working in public services were not answering the phones because they were working from home and the phones were not being monitored or the calls were not being transferred. We need continuously to think about including everybody but we do not do that. It is important and it is what the committee needs to do.

Many of the points I had intended to make have been made and I agree with them, but there are a few further questions I wish to ask, one of which relates to education. I was a teacher before I was elected. What is the delay in the EPSEN Act being fully commenced? I often talk to parents who have known their child has had a learning difficulty from early on in life, or perhaps the teacher in the school has realised, and the child goes to have an assessment but that takes years unless the parent has the money to pay for it. When the child finally has the assessment, whichever way it happens, he or she goes to access whatever therapy is needed, such as speech and language or occupational therapy, and there is another waiting list. The parents of these children or young adults say they have to fight for everything throughout their lives, but they should not have to. People should be entitled to whatever needs they have. The earlier that interventions can be made in some cases, the better.

The other matter that concerns me is the move away from congregated settings. It was supposed to be the case that by 2016, we would have closed congregated settings, but that was changed to reducing their use by one third by 2021 and to closing them eventually. According to HIQA, there are still almost 3,000 people in congregated settings and that does not count all the young people in nursing homes. How long will that process take?

Chairman

With the agreement of members, we will take questions from Deputy Canney next before taking the final two speakers. There will be pressure at 6.30 p.m. Is that agreed? Agreed.

Deputy Seán Canney

It is the start of a good relationship. We must ensure whatever we do, we do it right. I said last week at our previous meeting that, as a politician, when I meet people I sometimes come across matters that I am not proud of. That is something I want to change, as does every member of the committee. We can do it with our guests' input, experiences and in light of the fact that they know what they are talking about because they are living through the experience. We need to hear all of that. As Deputy Tully noted in respect of education and children seeking services, getting the assessment right and then trying to meet the consultants and so on, it is a battle from day one. I have come across children who have been diagnosed as having a condition from birth but still they have to prove they have it every time they apply for something. They have to do it again and again and it is a grind. I have a bee in my bonnet about that.

Having listened to our guests' presentations, I will not ask them any questions. A plethora of legislation needs to be enacted. Some of it was mentioned in the presentations and spoken about. As legislators, we have a hell of a job to do. Under the chairmanship of Deputy Michael Moynihan, we will do what we can. The Minister and the Minister of State appeared before the committee last week and they too have an attitude of wanting to make a difference. We are working with them, as opposed to anything else, but we will also keep everybody accountable. I will not hold up our guests further other than to say we will talk to them all again. It is important that we do that because it is not a case of them just having their day in the sun before the committee, telling us what is wrong and then going away, where it would fizzle out. This is a relationship that is only beginning to develop between us as a committee and our guests, and I look forward to working with them in that regard.

Ms Sinéad Gibney

I thank Deputy Canney. I really welcome what he has said. It is important that we work together and as I said in my opening remarks, we, as a commission, stand ready to assist this committee. The committee members will be seeing us again, there is no question.

I will reply to a couple of points raised by Deputy Tully, particularly those around education. The EPSEN, Act 2004 is not fit for purpose. It is outdated and needs reform based on consultations with people with disabilities and their families. It needs to look at each individual's potential rather than the educational setting into which they are being put. That again plays into the mindset shift and looking at these matters differently.

I cannot answer the question as to why the legislation has been delayed, except to say that we are as frustrated as is the Deputy at that. The Disability (Miscellaneous Provisions) Bill was due for commencement but died with that particular Oireachtas in 2016 and has not come back onto the legislative programme. It is up to this committee to get that pressure on all those different items of legislation.

Turning to congregated settings, we have used our legal powers over a number of years in relation to people's dignity and other rights in institutional settings, in particular with respect to the rights of wards of court and the distinction between voluntary and involuntary detention. I mentioned, for example, the Optional Protocol to the Convention against Torture, OPCAT, and the legislation to commence that protocol is important because it allows us to be appointed as the national preventative mechanism. I believe it was Senator Seery Kearney who mentioned the need to look at issues before they arise and identifying them before they become issues. OPCAT would allow us to look at situations where the people involved do not have the capacity to decide whether they are being held in an institution. It allows us to monitor their rights and make sure they will not be transgressed in any way. Those are some of the things I would say around congregated settings. There are significantly higher death rates for people with disabilities related to the higher rates identified for vulnerable people living in long-term care settings, including nursing homes. That is a vital issue at which we look.

Dr. Aideen Hartney

I thank members for their questions. We were also struck by the Irish Wheelchair Association, IWA, survey this morning. I will note that the Minister has asked the National Disability Authority to develop a code of practice for accessible public buildings. The impact of that is that it will provide practical guidance for public bodies as to how they can make their premises more accessible to persons with disabilities. We would have a monitoring role in that respect. It is again about measuring and demonstrating performance that can hopefully drive change. We all know that public bodies are well meaning but sometimes need practical guidance that can help.

While the EPSEN Act is overdue for full commencement, there are developments within the system and increased investment from the Department of Education which we welcome. Some of those things, such as the school inclusion model, are showing a new approach to providing supports in order that children can participate in mainstream education. Even though the Act itself has not commenced, work is under way. We welcome that and advise its continuation while we await the commencement of the Act.

Dr. Rosaleen McDonagh

I do not want to get too convoluted but there are three things I want to say. The first relates to the UN Convention on the Rights of Persons with Disabilities. The committee should see that convention as the scaffolding of disabled people's public and private lives, the domestic way in which we live our lives, how we are educated and how we interact with buildings and whatever else.

I also ask the committee to please note that hundreds of Traveller children who are diagnosed to a high level as having special needs are then removed from classrooms and told to go home at 11 a.m. I ask the committee, in all fairness, what is all that about? We talk about an enriched syllabus that is supportive and challenging to all our children. I would argue that children with disabilities, regardless of their impairment or condition, need the stimulation and challenge of a robust education and a full day in school, not some notion from the 1950s that they go in for the morning and then go home. That is not on. We need to act in that regard.

Senator Fiona O'Loughlin

I thank our guests for their engagement. Just listening to the lived experience and the experience of those working and advocating for others, it strikes me more than ever that the last thing any of our guests want or need, and the last thing anybody with a disability needs, is another talking shop in this committee. We have to be ambitious and clear about what we can do within our term and make sure that we set our own implementation programme.

I am struck by everything that Dr. McDonagh has said. She spoke initially about shame and stigma. It is sad that a woman such as herself, who has achieved so much and is such a wonderful advocate, feels like that about having a disability.

Dr. Rosaleen McDonagh

I do not.

Senator Fiona O'Loughlin

That is good and I am glad to hear that. Dr. McDonagh mentioned shame and stigma earlier and she recognises that some people feel those things. I am really pleased to hear what she has said. I had intended to continue by saying that while the untapped potential of many disabled people is huge in terms of the contributions they can make to society, they are not empowered to do so at this point. It is wonderful that we have Dr. McDonagh as an advocate for those who do not have the opportunity to advocate for themselves. I thank her for that because there are not enough advocates.

I was struck when Dr. McDonagh was talking about the ableist view of things. We often hear about white privilege and it had not really occurred to me that I have a privilege but now, listening to Dr. McDonagh, I understand that I do. As a part of that privilege comes a responsibility to help those who do not the privilege I enjoy in terms of being an abled person.

I agree with what she said to the effect of "nothing about us without us". The voice of people with disabilities has to be front and centre and at the heart of everything that we do. I was involved in the lobby for the EPSEN Act in 2004 because it came after the Special Olympics World Games in which I was involved in 2003. We have to fight for the full commencement of that legislation. I would be interested in Dr. McDonagh's advice as to how we can ensure progress in that regard.

While looking for educational opportunities for those with disabilities, I am conscious that we also need to look at how we can educate others and students in our schools about those with disabilities. I know a wonderful mum, Ms Amanda Kehoe, who has a young son in a wheelchair. Not finding any material available, she wrote her own book, The Adventures of TJ and his Wheelable Chair. She contacts schools, goes around to them and gives reading lessons in order that students have the opportunity to learn about another perspective and how important it is that we encourage our young children and students to think about the ability of the person who has a disability.

The recommendations that the commission made for our terms of reference are worthwhile, in particular on direct engagement and the diversity of people with disabilities. As we know, disability takes many forms. Life can be particularly difficult for those who do not manifest visual signs of disability.

I also appreciate the recommendations for our work programme. I would like to ask the Irish Human Rights and Equality Commission about the timeline for Ireland's first report on the UNCRPD. I also want to ask the witnesses about the reporting schedule. That is important. We have to take a rights-based approach. That is enshrined in this and is very different from the model we had. Do the witnesses have comments on that?

I refer to the NDA and the key legislative areas where progress is required. Perhaps its representatives could comment on the timeline on that.

Deputy Thomas Gould

I thank everyone for their contributions. They are very profound, especially that of Dr. McDonagh.

I will talk about lived experience. There was an issue in Cork this year, and witnesses might be able to give me some advice. Cork City Council closed some streets to provide for more on-street dining. This resulted in the closure of some disabled parking spaces and the opening of new ones. In the new spaces, cars opened onto the road and did not have access to footpaths. When we engaged with the city council on the matter, it seemed to be willing to deal with the issue. Are some local authorities setting a benchmark for disability parking and access to buildings? I tried to get Cork to become a city that would be considered to be a disability friendly city. That is something we should consider pushing nationally.

Like Deputies Wynne and Tully, I have a lot of friends who have different types of disabilities. I promised them that when I got to the Dáil I would continue to fight to highlight their issues. We will work with the committee in the best way we can to try to accomplish things.

Housing is a major issue. I am on the Oireachtas Joint Committee on Housing, Local Government and Heritage. I would like to hear the thoughts of the witnesses on whether on a percentage of all housing developments should be ring-fenced for people with disabilities. Is that something we should push?

The witnesses spoke earlier about some of their legislative priorities. What are the key priorities that we need to work on the hardest?

Dr. Aideen Hartney

I thank the Senator and Deputy for their questions. In terms of the key legislative areas or timelines for them, our understanding is that the Disabilities (Miscellaneous Provisions) Bill should recommence its progress through the Oireachtas early next year. The original Bill fell when the last Government fell. That is a matter for the Minister and the new Department but that is our current understanding.

We would advise that one of the priority areas should be the full commencement of the assisted decision-making legislation and of the Mental Health Act. Without them, we will not be compliant with those key articles of the convention.

Given the conversation we have had about education, we are aware that the UN monitoring committee would not find Ireland compliant with the principles of inclusive education. We would advise that those areas should be the focus of the relevant Departments.

I want to respond to what Deputy Gould said about streetscapes post Covid. This is something we have seen ourselves and advised on. The rapidity of the changes brought in to address an emergency situation has caused us to be deeply concerned about the extent to which some local authorities made changes without consultation.

As for how local authorities can improve their performance, one of the tools that is currently being developed by the National Transport Authority is a walkability audit which examines how accessible local communities are for a wide range of users, including persons with disabilities, older persons, people with pushchairs and all of that kind of thing. It is a possible way of looking at the issue and improving performance in that regard.

On Deputy Gould's question on housing, we would advise that all new social housing should be developed in accordance with universal design principles. That means that they would be suitable for persons with disabilities or for adaptations and suitable for older persons and people of all ages, sizes, ability and disability. We have advised the Department of Housing, Local Government and Heritage that if it wanted to start incrementally, at least 30% of any new social housing development should be done in that way. We would hope it would be receptive to that idea.

Dr. Rosaleen McDonagh

I do not mean to be rude. I agree with universal design for lifelong living for all of us. When I think of housing I think of accommodation and of Travellers and Roma people. That is all I have to say.

Chairman

Senator O'Loughlin had to leave because there is a vote in the Seanad. There was no disrespect to the witnesses. It was remiss of me not to say that at the outset.

Dr. Rosalyn Tamming

To respond to Senator O'Loughlin's question on how we are promoting awareness around disability in schools, the NDA has its annual universal design grand challenge today. Third level institutions are encouraged to apply universal design in their design programmes for the competition. Projects for primary and secondary school are being developed around universal design. I mentioned earlier the art competition for children in primary school.

Ms Sinéad Gibney

I will build on some of the comments that have been made. Dr. Hartney has covered the legislative piece.

In response to housing, those measures are welcome but I have the same response as I did to the employment piece earlier. Such a systemic change needs to happen that I do not think we need to focus on one piece. Instead, we need to think about accommodation needs. There are many different issues around housing. One example is that housing for older adults with intellectual disabilities is simply not facilitated. People are passed from pillar to post between local authorities and the services they work with. Ultimately, there seems to be a State mentality that older parents will care for their children with disabilities until those parents die and, if they are lucky, those people will be facilitated by the State after that. That is shocking and probably affects hundreds and thousands of families in the country. It is a question of going back to the UNCRPD and looking at it at a more systemic and wholesome level.

I will be happy to follow up on Deputy Gould's question on local authorities but I do not have a best-in-class example that comes to mind immediately. I will follow up on that, however. I would encourage the committee and people in local authorities to consider using the public sector equality and human rights duty to push for change in local authorities and for accessibility in their local environs. All local authorities have a duty to consider the human rights and equality considerations of all of their functions, of their service provision and of their employment practices. That has been on the books since 2014. As a commission, we are now moving from the education and encouragement phase that we have been in towards more enforcement and compliance measures.

Local authorities are definitely a significant part of that so I would encourage the committee to promote that.

Dr. Rosaleen McDonagh

In respect of recent legislation pertaining to landlords and evictions, I ask that we look at local authorities evicting really vulnerable families - Traveller families who have children and adults with disabilities. When we talk about housing, why do we always talk about it in the context of settled disabled people? Why is it not more inclusive of other minority groups who are disabled as well?

Chairman

I thank all the witnesses for their engagement. We really appreciate it. As some of the members said, this is only the start. We will be engaging with the witnesses throughout. We are only setting the terms of reference of our committee. One point that came across clearly today that must be reflected concerns the gaps in legislation and the challenges. A number of witnesses mentioned a number of pieces of legislation and we must reflect that in our terms of reference. It concerns the legislation that must be enacted and how it is to be enacted. We will reflect very carefully on it. Everyone who contributed to the committee really thinks that we can do something here and advance the cause of people with disabilities across the spectrum. We intend to do that. Regardless of whether or not we fail at it, we will try to do that.

Tidy Towns has been a national movement for decades. I think we should look at a national inclusion competition involving towns, not just for the sake of the competition but to promote awareness that there are challenges and we need to reflect and make our communities better, be they large urban or small rural communities. There is scope there and it is something we should look at. The witnesses have given us food for thought and we thank them sincerely. We are very sorry we have the two-hour slot because we could go on for hours but we must make the most of it. I thank the members of the committee for being so engaging and we look forward to working with them.

The joint committee adjourned at 6.23 p.m. until 4.30 p.m. on Wednesday, 18 November 2020.