Maurice Quinlivan (Limerick City, Sinn Fein)
Link to this: Individually | In context | Oireachtas source

Apologies have been received from Senator Nikki Bradley. Today we continue our discussion about progressing the delivery of disability policy and services. From the Irish Human Rights and Equality Commission, I welcome Mr. Liam Herrick, chief commissioner, Dr. Iris Elliott, head of policy and research, and we will later be joined by Dr. Rosaleen McDonagh, commission member.

Before we begin, I will read a note on privilege and housekeeping matters. All witnesses are reminded of the long-standing parliamentary practice that they should not criticise or make charges against a person or entity by name or in such a way as to make him, her or it identifiable, or otherwise engage in speech that might be regarded as damaging to the good name of the person or entity. Therefore, if their statements are potentially defamatory in relation to an identifiable person or entity, they will be directed by me to discontinue their remarks. It is imperative that they comply with any such direction I may make.

I also remind members of the constitutional requirement that in order to participate in public meetings, members must be physically present within the confines of the Leinster House complex. This is due to the constitutional requirement that in order to participate in public meetings, members must be physically present within the confines of the place where Parliament has chosen to sit, and that precinct is the Leinster House complex.

I invite Mr. Herrick to deliver his opening statement.

Mr. Liam Herrick:

I am here with my colleague Dr. Elliott, our head of research and policy. We will later be joined by commissioner Dr. McDonagh, who has unfortunately had a transport difficulty this morning, which speaks to some of the issues we may address with the challenges people face in terms of accessibility. The Irish Human Rights and Equality Commission is Ireland’s independent national human rights institution and Ireland's independent national equality body. For today's purposes and discussion, we are also designated as the independent monitoring mechanism under the UN Convention on the Rights of Persons with Disabilities. We have just published our first report under the UN Committee on the Rights of Persons with Disabilities in our function and role, which was submitted to the United Nations in the past two weeks and will inform its identification of the priority list of issues it will examine Ireland on. The report will lead to a discussion with the committee in August of this year.

Our report is informed by the voices of disabled people in Ireland, whose lived experiences are reflected in its findings. In its preparation, we engaged extensively with disabled people, including consultation events with disabled persons organisations. All of our work in this area is advised and guided by our disability advisory committee, which is composed primarily of people with lived experience of disability. As the committee knows, under the UN Convention on the Rights of Persons with Disabilities, disability is correctly recognised as a natural part of human diversity, a part that must be respected and supported in all its forms. Disabled people have the same rights as everyone else in society, including the right to live independently within the community. Disability-related needs do not provide any excuse for the State restricting this right. The implementation of the UN Convention on the Rights of Persons with Disabilities requires transformative and holistic change based on an equality and human rights model, including through investment by the State to eradicate poverty and social marginalisation of all disabled people. Unfortunately, our report lays bare the stark fact that Ireland is fundamentally failing to uphold the rights of persons with disability.

It is a comprehensive report addressing all 33 articles of the UNCRPD, but I will briefly touch on some of the areas of particular concern. We find in our report that institutionalisation is effectively being tacitly endorsed by the State through the chronic lack of community-based supports and housing for disabled people.

From early childhood through to old age, disabled people are too often denied the opportunity to live independently in their communities. The current accommodation crisis does not in any way excuse the inability of the State to fulfil its obligations in this area. In this regard, we note the consistent comments of UN committees emphasising that Ireland is one of the wealthiest countries in the world and that temporary shortages of resources cannot justify denial of rights.

Congregated and institutional settings continue to expose disabled people to the risk of harm, despite Ireland’s own painful history of institutional abuse. The State has repeatedly failed to safeguard vulnerable individuals in these settings.

Domestic, sexual and gender-based violence against disabled people is a matter of serious concern identified in our report, in both institutional and domestic settings. There are no measures targeting disabled women in the various national strategies on employment or domestic, sexual and gender-based violence.

Education systems, meant to foster inclusion and opportunity, have instead perpetuated exclusion. Disabled children are routinely denied their right to inclusive education, and serious concerns remain about the use of seclusion and restraint in schools.

Our report identifies a comprehensive set of measures across all of these areas that could, if the political will was there, transform the lives of disabled people in Ireland. Our report is particularly timely because, as the committee knows, we are awaiting the national disability strategy, which is now being described as the national human rights strategy for people with disability. It is imperative that this strategy provides for the transformational reform that is needed. It must address outdated legislation, fill policy gaps and ensure leadership and measurable actions to address the current systemic barriers to equality and non-discrimination. Of course, the strategy must be owned, informed and guided by disabled people. Central to this work is meaningful engagement with disabled people and disabled people’s organisations, as a key pillar of the implementation.

Law reform must play a key role in this strategy, including review of the Equality Acts - we appeared before the children, disability and equality committee concerning this issue last night - the EPSEN Acts in the sphere of education, the Mental Health Act and the introduction of fresh legislation regarding safeguarding and persons deprived of their liberty.

I take the opportunity to introduce my colleague Rosaleen McDonagh, who has just joined us. As many committee members will know, Dr. McDonagh is not only a member of the Irish Human Rights and Equality Commission but also chair of our disability advisory committee. I know she has addressed this committee in the past. Dr. McDonagh and I, and my colleague Iris Elliott, our head of research and policy, would be happy to take questions. The key point from our report is that when Ireland ratified this treaty, we committed to recognising disabled people as full and equal participants in society. As we come before the UN committee and as we launch a new disability strategy, this is now the moment that we finally fulfil those aspirations and promises.

Maurice Quinlivan (Limerick City, Sinn Fein)
Link to this: Individually | In context | Oireachtas source

I thank Mr Herrick. I now invite members of the committee to put their questions. Members should adhere to the agenda item scheduled for discussion. All members have seven minutes. The first speaker is Deputy Keogh.

Keira Keogh (Mayo, Fine Gael)
Link to this: Individually | In context | Oireachtas source

I find myself meeting Mr. Herrick and Dr. Elliott again as I was involved at the meeting yesterday evening. I thank them for coming back again. It is lovely to meet Dr. McDonagh.

Yesterday, at the meeting of the Committee on Children and Equality, we were discussing the Equality Acts. Will the changes to the Equality Acts requiring disabled people to be paid the same as everybody else make a difference or will the status quo remain because that is being made up with the wage subsidy scheme? Will the changes to the Acts create any meaningful difference for disabled people at work?

Dr. Iris Elliott:

I thank the Deputy for her question. It is good to see her again. We believe that the changes indicated in the Equality (Miscellaneous Provisions) Bill are very minimalist. It is a long-standing issue that there has been a legal basis for differential pay to disabled people but, as we heard yesterday, Ireland is one of the worst performers in the employment of disabled people in the world and certainly a laggard in Europe. That is a minor issue compared with the more global issues regarding the employment of disabled people. Linked to that is the education of disabled people across their lifespan. We have a developed position. We have the code of practice on reasonable accommodation in employment, which we are waiting for the Minister to publish. We made a submission to the EPSEN review, which we can share with the committee, around the issues of access to education. We have a range of evidence about the lack of availability of decent work. One of our concerns is that a lot of the focus on employment of disabled people is just getting people into work rather than their having access to decent work. That would be a concern. It is a very minor change and we cannot overstate how disappointing it is that that is the only thing we have on the payment of disabled people.

Dr. Rosaleen McDonagh:

The public sector has been progressive in many ways, but the private sector has been really bad in employment, not just employment but also professional development. As Dr. Elliott said, it starts off in the classroom and if disabled people are not in mainstream or able to access mainstream leading to mainstream employment with fair, decent and equitable wages while the employer is supported to adapt reasonable accommodation, then it is not really work.

Keira Keogh (Mayo, Fine Gael)
Link to this: Individually | In context | Oireachtas source

Does Mr. Herrick wish to add to that?

Mr. Liam Herrick:

I will just add two points to that. Dr. McDonagh mentioned the issue of employers and reasonable accommodation. We made this point to the other committee yesterday, but I will reiterate it to this committee. The Irish Human Rights and Equality Commission submitted a code of practice to the Minister for children, disability and equality two years ago. It set out how employers can vindicate the right to reasonable accommodation in the workplace. That has still not been approved and introduced by the Government. That is a clear practical step to allow this to be fulfilled.

We also state in our report that discrimination in employment when people are in employment is a key factor. It is very often one of the reasons that people end up leaving employment. We have made recommendations that the Labour Court and the Workplace Relations Commission should effectively be accessible for people with disability. There is also a question of access to justice; people are very often not able to bring their claims.

Keira Keogh (Mayo, Fine Gael)
Link to this: Individually | In context | Oireachtas source

I think we discussed this recently. Disabled people working is still viewed in a medical or care model where employers feel they are doing a good deed by hiring somebody with a disability rather than really getting to know the person, making the reasonable accommodations and the work being meaningful.

Dr. Rosaleen McDonagh:

I do not want a job; I want a career.

Keira Keogh (Mayo, Fine Gael)
Link to this: Individually | In context | Oireachtas source

It needs to be a meaningful career where the person is valued. I absolutely agree.

I listened to Mr Herrick's opening statement on our history of institutional abuse. At the moment, one of my big fears is that we are at full employment and it is very difficult to get people into section 38 and section 39 jobs. There is a risk of burnout and a risk of cutting corners. I would like to hear the witnesses' views on those risks.

Dr. Iris Elliott:

More generally IHREC has commented on the right to decent work. We did a report outlining the key components of decent work across six different dimensions.

There is a particular concern around how people are employed within disability services. As Mr. Herrick said, we have a code of practice awaiting publication on reasonable accommodation in work but we also have a code of practice on the public sector duty. The public sector duty includes services that are provided in voluntary and private sector organisations. There is a standard there in terms of health and safety for workers in those lower-paid sectors and having access to an adequate income. There is a systemic issue around how disability supports are provided and how services are funded. There is a strong question about whether they are human rights and equality compliant in terms of decent work. These are long-standing issues about the decent work experience of people who work in those services.

Laura Harmon (Labour)
Link to this: Individually | In context | Oireachtas source

The report makes for stark reading. The witnesses outlined some of the key areas in their opening statement regarding institutionalisation, safeguarding in congregated and institutional settings and how the housing crisis is affecting people with disabilities, as well as very concerning information regarding domestic, sexual and gender-based violence. I am glad that our education system has been raised. We are the worst in Europe in terms of employment rates and 20% behind the European average when it comes to employment, retention in employment and long-term career planning. Could the witnesses expand on what the State needs to do to ensure we are safeguarding people and how the State needs to step up?

Dr. Iris Elliott:

With any measures around disabled rights holders, there is a need for the system to be equality and human rights-proofed and to ensure it adheres to the principles of the UNCRPD and all the all other instruments as well. To speak to people in congregated or institutional settings, I appreciate that the committee has been very focused on the optional protocol of the UNCRPD but IHREC is also the designated body for acting as a co-ordinating national preventative mechanism under the optional protocol on the UN Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment. Ireland has not ratified the Optional Protocol against Torture, OPCAT, which again makes it a laggard and an outlier in Europe and globally. The need to frame the experience of people around safeguarding in institutional settings in OPCAT as well as the UNCRPD is really important and we call for the ratification of OPCAT as a matter of urgency through the inspection of places of detention legislation.

The other point I would make around safeguarding is a concern that as has often happened because of the medicalised model predominating around disability, safeguarding is often seen as a health issue and not a cross-cutting issue. I would also encourage the committee to think about safeguarding within a much broader context. The other issue we have raised is that domestic settings for disabled people are often institutional settings and so when we are talking about domestic, sexual and gender-based violence, that often happens in an institutional setting.

Dr. Rosaleen McDonagh:

We are just over the aftermath of the Grace case and the nursing home issue, which is ongoing for IHREC. This is not an isolated situation. We do not live our lives in a vacuum, and information of liberty and other instruments, such as the Convention on the Elimination of All Forms of Discrimination Against Women, CEDAW, need to be mainstreamed so those benefit women with disabilities.

Laura Harmon (Labour)
Link to this: Individually | In context | Oireachtas source

I know there have been calls for a review of the Disability Act 2005. The programme for Government commits to this. What needs to be considered as part of that?

Dr. Iris Elliott:

The Disability Act 2005 predates the UNCRPD so it has never been UNCRPD-compliant just because of a timeline. There have been calls for a fundamental review since the Act was commenced because it was already regarded as quite an inadequate piece of legislation and basic rights were not provided for in certain areas. For example, in the provision of support services, a very minimalist approach was taken. A root-and-branch review is required but IHREC has also taken the view that a number of key pieces of legislation need to be reviewed together such as the EPSEN Act 2004 and the Disability Act 2005. We are always concerned that people's psychosocial disabilities are in some ways still segregated from the rest of the disability community and, therefore, the long-awaited reform of the Mental Health Act is critical. We have provided a range of commentary around the limitations of the Assisted Decision-Making (Capacity) Act 2015 and the amendment Act. Therefore, that is part of it as well. As Dr. McDonagh referred to, the lack of progress around the protection of liberty safeguards legislation is profoundly worrying. The Inspection of Places of Detention Bill needs to progress as well. That would be the only thing I would caution the Senator about. IHREC can provide a commentary around that where we would say that these are the key core pieces of legislation and they all need to be reviewed and reviewed in a very transparent human rights and equality-compliant manner. We are very happy to assist in terms of the methodology that should be used in that and how it should be publicly reported and how disabled people should be part of that process.

Mr. Liam Herrick:

We have monitored the recent interactions the committee has had with other stakeholders as well. In terms of the review of the Disability Act and the question raised by Senator Harmon, we would be very concerned that waiting lists for assessments of need would be in any way used to justify any dilution of the right to an assessment of need. There must be a legal right to assessment of need and there must also be a legal right to access the delivery of services. One should not be traded against the other. That is an essential and fundamental principle about the review of the Disability Act.

Dr. Rosaleen McDonagh:

When I was very young, I learned to have little faith regardless of the Act but I do have faith in the UNCRPD. This is about setting universal standards in all areas of our lives around access to services and redress. I hope that much more effort would be put into the implementation of the UNCRPD rather than the Act. Acts come along but are rarely implemented.

Gillian Toole (Meath East, Independent)
Link to this: Individually | In context | Oireachtas source

I thank the witnesses for everything they do.

I thank them for the guidance and invaluable reference source. As somebody new in Leinster House and to this committee, pardon me if the phraseology of my questions might be blunt. They are not intended to be disrespectful. I have two questions. I also thank the team, as always, for circulating the information and, in particular, background information before each session.

How specifically have the witnesses and their organisation been involved in the new national disability strategy? Has there been any invitation to participate in a review of the 2005 Act?

On the participation of young people, does IHREC have a youth advisory panel? There need to be parent advocates and guardian advocates, but the involvement of young people in the structure is relevant as well.

Dr. Iris Elliott:

On the review of the national disability inclusion strategy and the successor strategy, we have been very proactive in engaging with the Department. The national disability inclusion strategy ran out years ago. Our view is that it was already very limited and not sufficient to implement the CRPD or other international standards. To assist the Department, we sent it through a compilation of all recommendations and concluding observations from the United Nations, the Council of Europe and the EU reviews of Ireland because the approach we have taken as the independent monitoring mechanism is always to raise issues around disability rights in whatever fora we are. There is a whole body of assessment by human rights and equality bodies around the inadequacies of Ireland’s performance around disability rights. We shared that with the Department in March 2024. We have repeatedly attempted to engage with it on the matter. We have repeatedly asked for updates regarding the progress on the national disability strategy. We have had verbal briefings and draft documents, and we have provided feedback on those, raising quick, significant concerns about what has been proposed. I am conscious it has not been published yet, so we will wait to see the final text of it. We always provide a comment on the equality strategies around where we think they are inadequate or adequate. As the independent monitoring mechanism, we also state our expectations about our participation in the oversight structures and we have requested observer status as the independent monitoring mechanism. We were still exchanging correspondence as of last Friday to respond to the Department’s view on it. I do not think we can say anything more than that.

In summary, we have been very proactive. We have tried to assist and it has been a relatively frustrating and limited process. However, this would not be uncommon. I appreciate the committee will be very focused on the national disability strategy, but we also do not have a national women and girls’ strategy, we only just received an LGBTIQ strategy, the NTRIS only came out at the start of this year and there is no sign of the migrant integration strategy. Given intersectionality is a core component of the CRPD, that is extremely worrying. I note this committee has looked previously at Article 31 on data collection and statistics. We are still waiting for the equality data strategy as well, although that was substantially advanced a year ago. I express that we have tried to support the Department but it has been a very difficult and frustrating process.

Mr. Liam Herrick:

I will address the question about the participation of young people. It is an important point. First, as we have said, all of our work in the sphere of disability is advised and guided by our disability advisory committee, which is composed of persons with lived experience with disability. We are currently recruiting a new disability advisory committee. In that process, we are seeking to ensure the widest possible diversity of experiences of different types of disability but also particularly the question of the specific needs of young people with disability and older people with disability. It is a very live concern to us.

In the development of the wider strategy of the Irish Human Rights and Equality Commission, we utilised a youth advisory panel to advise the wider strategy, which gave advice to the experience of young people, so it is a well-made point.

The Deputy also asked whether we had been specifically invited to contribute to the review the 2005 Act. I do not think any such review been initiated to date, but we are clear that there does need to be such a comprehensive review, and we have already made submissions on what we feel the core principles that should guide that process are.

Gillian Toole (Meath East, Independent)
Link to this: Individually | In context | Oireachtas source

I will just make a comment.

Maurice Quinlivan (Limerick City, Sinn Fein)
Link to this: Individually | In context | Oireachtas source

Take your time.

Gillian Toole (Meath East, Independent)
Link to this: Individually | In context | Oireachtas source

There is an alarm bell going off in my head, so I think our meeting is timely. I will be bold in saying that we will be having future meetings, or we will urgently need to schedule them for the autumn.

Margaret Murphy O'Mahony (Fianna Fail)
Link to this: Individually | In context | Oireachtas source

I welcome Mr. Herrick, Dr. Elliot and Dr. McDonagh. Mr. Herrick and Dr. Elliot nearly qualify for squatter’s rights now, having been here yesterday evening. That shows their commitment to make themselves available for different committees. Well done, and well done to the three of them on the great work they do.

The report makes it very clear that we have an awful long way to go to fulfil our promises to people with disabilities. The voices of the lived experience of people in the report should be our compass going forward. Any day we feel like giving in or saying this will never happen, their voices should keep us going.

I have a few questions. The IHREC calls for the forthcoming national disability strategy to be transformative and measurable. Has IHREC established criteria or benchmarks to assess whether future policies genuinely align with its principles? How will these metrics be communicated to the public and monitored over time?

Maurice Quinlivan (Limerick City, Sinn Fein)
Link to this: Individually | In context | Oireachtas source

We are literally here in the dark. To the people who are watching this, hopefully we will get back up as soon as we can. It seems to be a power outage across the Leinster House complex. We will come back as soon as we can. We will suspend. Is that agreed? Agreed.

Maurice Quinlivan (Limerick City, Sinn Fein)
Link to this: Individually | In context | Oireachtas source

There was an electricity fault there, so we lost power for a while. Apologies to anybody listening in and particularly to our witnesses and to the members of the committee. The next speaker is Senator Tom Clonan, who has seven minutes.

Tom Clonan (Independent)
Link to this: Individually | In context | Oireachtas source

I thank the witnesses for attending and Mr. Herrick for his presentation. It is great to see Dr. McDonagh again. I am sorry she got delayed on the way in. I have a question for all three witnesses. I know Mr. Herrick is relatively new; his is a relatively recent appointment. I congratulate him on that. I am delighted to see him in the role. I relied heavily on many of his publications previously during the referendum campaign, so I put my bias out there in that regard. That was much appreciated. We had the National Disability Authority in here two weeks ago and the Minister of State, Deputy Naughton, last week. As a parent and a carer and in a family who has direct lived experience of disability in Ireland, our experience of it as a family is that it is really abject and suboptimal in so many ways. I was trying to get a sense from the NDA and from the Minister of State if they felt it was a crisis. The Minister of State certainly did not communicate to me any sense that it was a crisis and that we were outliers internationally. Certainly, from Mr. Herrick's initial findings around institutionalisation, congregation or, as I call it, warehousing, there is inappropriate warehousing of young adults in nursing homes in the greater Dublin areas. There are thousands of people who have been literally warehoused. Normally, when elderly parents pass away or go into crisis, suddenly you have a young adult with nowhere to go, or it could be someone with acquired brain injury. There is no accessible accommodation for them. Forgive me for the length of time it is taking me to frame the question but why are we outliers? Why is there no political will to vindicate the rights of disabled citizens here? What kind of legislative basis would the witnesses like to see? Do we need to have really clear socioeconomic rights for disabled citizens as they do in all other jurisdictions? The Minister for public expenditure and reform does not agree with that ideologically. He feels it would expose the State to costs. This was communicated to us quite clearly during the referendum campaigns on care and also by the advice furnished by the Attorney General to the Government on the wording of the care referendum. I know "care" is a paternalistic word but it is relevant to the conditions in which disabled citizens find themselves living. I am sorry about the long-winded question. I am just curious to know if the witnesses have any ideas around that. Is it an historical thing, is it a post-Catholic, post-colonial, shame-based culture, or is it a conservative idea that women and girls must bare the responsibility for infirmity and disability? What do the witnesses think? They can take their time.

Dr. Rosaleen McDonagh:

It is a very good question. What I would say is we have always relied on Europe to embarrass our legislators into doing the right thing. We have seen it with Travellers and with refugees.

We have seen it throughout history that when Ireland does not behave, Europe has to step in. In terms of crisis, I would say the lack of strategies and implementation has led to a vast load of crises. I would also say that there is an inertia around disability services access and citizenship. Lastly, the previous Deputy asked about young people. At this time of year, there are two very serious issues for young people with disabilities. One issue would be around access to reasonable accommodations for the leaving certificate, in order to be able to do the leaving certificate and apply for third level. The other issue is rural transport to local primary and secondary schools. They are just two examples of the inertia.

We do not seem to learn. However, I resist being cynical. I believe Ireland has the potential to be a leader. The UNCRPD is a map and within that map we have an opportunity and the potential to look at all of the articles and integrate them into our overall legislative structure. Again, for IHREC, it is about achieving our goals. We have four particular issues: deprivation of liberty, the right to independent living, and tackling the issue of violence in general towards disabled people but specifically gender-based violence. I am nervous. What was the fourth one, Dr. Elliott? Oh yes, access to justice.

I do not want to tell the committee that there is not a crisis. We all have individual crises around services but I believe there is a way forward. I believe Ireland has enough money to do what needs to be done.

Mr. Liam Herrick:

Our report is the first comprehensive analysis of the situation in Ireland against the UN Convention on the Rights of People with Disabilities. If one looks at the gap that we identify between the State's obligations and the reality on the ground, it is not unfair to describe that as a crisis. It is a very stark gap, as we describe it. In terms of why we have that gap, Dr. McDonagh has identified a number of specific areas where it is clear to us that there is a need for enforceable rights and law reform. The difference between some of the progress that was made in Ireland over the last 20 or 30 years in areas such as women's rights, for example, is that sometimes there were EU legal obligations which forced the State to change. As the UNCRPD is not legally effective in Ireland, it will not force that change in and of itself. There needs to be domestic legislation in certain areas and we have identified a number of specific ones. In fairness, in the programme for Government there is a wide range of commitments to introduce law reform and to amend policy. Many of those measures, if they were introduced in the most effective and maximalist way possible, could really make a meaningful difference. It is early in the life of this Government so there is an opportunity here. Dr. McDonagh is right to be optimistic or to look on the bright side. If this Government and this Oireachtas fulfil the potential that is there and give effect to what has been identified in our report, we could see a meaningful advance in the next number of years. It is a political question as to whether the people elected to this House will demonstrate that will and it is not one that we can answer.

Maurice Quinlivan (Limerick City, Sinn Fein)
Link to this: Individually | In context | Oireachtas source

I now invite Senator Murphy O'Mahony to come back in. Apologies, we lost her earlier when there was an electricity cut.

Margaret Murphy O'Mahony (Fianna Fail)
Link to this: Individually | In context | Oireachtas source

I was just going to say that if they did not want to answer me, they should have just said it; there was no need to be turning off the lights.

I will just ask my first question again, if that is all right. The witnesses have called for the forthcoming national disability strategy to be transformative and measurable. Have they established criteria or benchmarks to assess whether future policies genuinely align with their principles and how will these metrics be communicated to the public and monitored over time?

Dr. Iris Elliott:

One view is that we benefit from the fact that we ratified the UNCRPD so late because so much work has already been done to set up monitoring frameworks and key indicators by the UN and other actors. That framework is what should be used for the national disability strategy and disability rights more generally in Ireland. If we use systems of metrics that are developed globally, they will enable us to measure domestically and to compare ourselves against other UN member states. Those are very comprehensive metrics. The work is already done. The issue now is probably selecting which of those to use and we are doing some work in that area ourselves. That relies on good data and evidence. As I said earlier, we have an equality data strategy in draft which has simply not been progressed and published. We need to do a whole reform of the data infrastructure in Ireland in order that we can realise Article 31 of the UNCRPD in particular. A lot of work has already been done. It is just an implementation issue at this point.

We are also about to publish what we are calling the core components of a national equality strategy. That would include the disability strategy, even though as Liam has mentioned, it is now being called a human rights strategy. We identify five core components including things like data evaluation, accountability, participation, and what we call collaborative governance. It is very much about working with rights holders and civil society in terms of the design, delivery, implementation and review of policy. One thing we would stress, particularly given that we lived through the pandemic recently, is the need for policy to be flexible so that if there are emerging issues, we can respond to them.

Margaret Murphy O'Mahony (Fianna Fail)
Link to this: Individually | In context | Oireachtas source

In terms of communicating to the public-----

Dr. Iris Elliott:

That is absolutely key. Accessible communication is also important and again, we benefit from the fact that not only is there the UNCRPD, but there are also all the general comments and interpretations on things like accessibility. I would also draw attention to the EU directive on standards for equality bodies which need to be transposed by 19 June 2026. There are particular articles there about information, promotion of rights, reasonable accommodation, and equal access for all. In terms of our role as the national equality body, there is an article on data. There are lots of resources forthcoming from the transposition of those standards in an ambitious way in terms of our own responsibilities, not only as the independent monitoring mechanism but also as the national equality body.

Margaret Murphy O'Mahony (Fianna Fail)
Link to this: Individually | In context | Oireachtas source

Disabled women face a double layer of marginalisation, with gaps in the domestic, sexual and gender-based violence strategies. How can Ireland's national strategies be revised to specifically target protections for disabled women and girls facing a double whammy?

Dr. Rosaleen McDonagh:

I might ask Dr. Elliott to help me again. I would say that the lack of a women's strategy is a huge issue for all women.

Services at their best are under-resourced and, therefore, the accommodation of disabled women's services needs to be resourced and there needs to be training. In addition, women's organisations, be it the National Women's Council of Ireland or other women's networks, need to embrace disabled women and respect our lived experience. Also, and more importantly, it is important that young disabled women and girls have the language of empowerment and understand and know issues of consent, safety and violation.

Does Dr. Elliott want to say something?

Dr. Iris Elliott:

I thank the Senator for her question. The concluding observations of the UN Committee on the Elimination of Discrimination against Women came out only on Monday. There are references to disabled women and disabled women participated in that review. I will share that information with the committee as well as the other disability findings of UN and Council of Europe recommendations. It is an area where there is a clear illustration of the importance of the leadership of disabled women and girls and disabled persons' organisations, both within the Oireachtas and outside of the Oireachtas. Dr. McDonagh and I first met maybe about 20 years ago, when we worked on this issue, and it concerns me that next year we will have the 30th anniversary of the Commission on the Status of People with Disabilities and this is a very long-standing issue and has been raised repeatedly. There has been guidance, there has been convening of meetings, there has been commentary on the very specific experiences of what is a domestic setting for our disabled women and girls and the lack of progress, the lack of reference to disabled women and girls in the zero-tolerance national strategy on women and girls-----

Margaret Murphy O'Mahony (Fianna Fail)
Link to this: Individually | In context | Oireachtas source

As if they do not matter, yes.

Dr. Iris Elliott:

There is a real lack of intersectionality. Again, I feel that 20 years on Dr. McDonagh and I are probably still having the same conversations along the lines of "We will get to disabled women and girls when we get the universal system up and running", and it is absolutely not sufficient.

I would connect the policy work but I refer also to the legislative work. We now have hate crime legislation. It is extremely important that that is accessible in terms of justice for disabled women and girls. We do not have hate speech legislation, and disabled women and girls are very affected by intersections of misogynistic hate speech and hate crime targeted towards disabled people. There are also particular characteristics of hate crime against disabled people, including women and girls, like mate hate, that need to be reflected in legislation. There is a piece there about the public discourse, which I think Dr. McDonagh has touched on, there is a policy piece to be done and then there is a piece around the legislative framework. As the national human rights institution, we would always argue for domestic implementation of international bodies' recommendations, including observations, particularly in light of the fact that ours is a wealthy country and nobody accepts that Ireland does not have resources to tackle this.

Dr. Rosaleen McDonagh:

Number one, access to women's services is very limited. I refer to rape crisis centres, sexual assault units, women's refuges and the Garda. The O'Mahony report highlighted that the judicial-----

Mr. Liam Herrick:

The judicial system.

Dr. Rosaleen McDonagh:

Yes. It does not acknowledge sexual crimes towards disabled women, which is very worrying.

Lastly, I echo Dr. Elliott: there needs to be a paradigm or a cultural shift regarding disabled people in Ireland and our rights as citizens but also a very big cultural shift around the role and the participation of disabled women in all areas of life.

Claire Kerrane (Roscommon-Galway, Sinn Fein)
Link to this: Individually | In context | Oireachtas source

I thank all the witnesses for being here and for their opening statements and their contributions so far. I will pose my questions and then whoever would like to answer them may do so.

As regards the upcoming review of Ireland's compliance with the UNCRPD, and given IHREC's role in the monitoring mechanism and being that independent monitor for it, how far of a gap do the witnesses think we will see in terms of Ireland's compliance? Are we 10% of the way? Are we 20% of the way? That might be a difficult question to answer, but given the witnesses are the ones doing the monitoring, how do they foresee our compliance will look in terms of the report following the review that will come?

As regards a couple of other issues, I refer to the review and the changes to the primary medical cert for the new transport scheme. I understand from the latest replies I have got that the new scheme is under way within the Department of Transport. There does not seem to be any level of urgency in terms of that scheme. It has been going on now for a long time, yet people with genuine need are being locked out of what is a really important scheme, particularly in rural areas, where there is a lack of public transport. Similarly, in terms of housing and education, there is a severe lack of planning as to why we are not building the houses at scale, whether they are for independent living for disabled people or, similarly, for older people. Do the witnesses foresee any level of planning or co-ordination, local authority by local authority, when it comes to seeing what the demand is in that local authority and building and planning ahead to make sure we have those houses? Is that done anywhere well internationally?

Dr. McDonagh made the point about early intervention and education and getting the supports at primary school and into secondary school and then going on to get a career that you will hopefully love and be able to progress in. I presume the witnesses would be concerned about the issues we have seen in terms of special classes and now the latest issue in terms of SNAs, where a SENO recommends an SNA and the school does not get that SNA. Again, I imagine that all feeds into that early intervention for young people and children with additional needs.

Lastly, I want to get the witnesses' views - reference has been made to this - on the assessments of need for children. We expect the waiting lists will hit about 25,000 by the end of this year. I would be very concerned about the commentary from the Government, with the Taoiseach yesterday saying again that we need to change the legislation. What that means I do not know, but would the witnesses have any concerns about any change to the legislation when it comes to the assessment of need, given it is the only legal entitlement for a person in terms of getting that assessment and getting then the services they need? The latter, of course, is another battle after that.

Mr. Liam Herrick:

The Deputy asked a number of questions. We will do our best to try to address them. If we cannot provide the specific information, we will certainly follow up.

The first question was about the review process under the UNCRPD. To explain briefly or to outline, and maybe other stakeholders have informed the committee of this before, the State has now submitted its report. We have done our independent report on the list of issues. In August, the UN committee will focus on what the priorities for Ireland are. Our report identifies - we do not give a percentage - a pretty wide gap between where we should be and where we are. The key thing for us is how this process can be as constructive and can assist the State as much as possible. If the list of issues focuses on what we feel are the most important issues - access to justice, independent living, deprivation of liberty and, in particular, the position of women - then we feel that will be of the greatest assistance to the State.

The examination will not take place until 2027. It is not that we can wait for the UNCRPD process to try to advance progress. That is not something we can do. At every stage of the process, we think more information will come out from the UN committee, which should guide the work of the Oireachtas and the Government in that regard. I think the second question related to transport. Dr. Elliott might wish to comment on it.

Dr. Iris Elliott:

We can come back to the committee with a specific comment on that topic. We do not address it at that specific level of granularity. I just checked our list of issues prior to report. We have done a lot of work around living independently and being included in the community. Accessible transport, rural transport and the environment leading up to being able to access transport points are all areas of consideration for us, so I will come back to the committee about it.

Claire Kerrane (Roscommon-Galway, Sinn Fein)
Link to this: Individually | In context | Oireachtas source

I thank Dr. Elliott.

Mr. Liam Herrick:

The third point was around housing. In our report, we talk about the principles of universal design and the concern we have about the proportion of local authority housing that is accessible. We know this is a live question now about standards for local authority housing. It is a particular issue in this city but more generally as well. There is a stark question there about our compliance with the UNCRPD if local authority housing is being developed which is not accessible. This goes to a wider question about independent living and people having a meaningful choice about where they live and with whom they live. We would be concerned about the direction of travel on that specific question.

On the question of education, we made the point earlier that we would be very concerned if there is any dilution of the assessment of need. The difficulty is not the assessment of need but the lack of investment of resources and the lack of an enforceable right of access to services once they have been identified. We recognise there is a significant backlog at present, but this needs to be addressed as a matter of urgency with the appropriate investment of resources in our view.

Dr. Rosaleen McDonagh:

I will say one other thing. Part of our remit in IHREC is around equality and diversity. There is a lot of diversity among disabled people. For instance, there is the issue of Travellers and the whole area of accommodation. Disabled Travellers' children, in particular, are very vulnerable because of the inertia of the local authorities. Additionally, and I am not a financial person, if we look at the Wasted Lives report around disabled people living in nursing homes and the cost of that as opposed to the cost of living in their own homes, having community services accessible is much more representative of value for money.

Claire Kerrane (Roscommon-Galway, Sinn Fein)
Link to this: Individually | In context | Oireachtas source

I thank Dr. McDonagh.

Liam Quaide (Cork East, Social Democrats)
Link to this: Individually | In context | Oireachtas source

I thank the witnesses very much for being here. I am sorry I missed the earlier part of the session but I had another engagement. We sometimes talk about the UNCRPD in this committee almost in the abstract, but I have a real-world example of a major service proposal in Cork that in my view and that of many of my colleagues represents a blatant breach of that convention. It will be a far-reaching permanent breach because the proposal is for a centralised residential mental health service that will detach people from their communities of origin and, in fact, from any setting that vaguely represents community living. I have raised this situation here repeatedly. I feel very strongly about it because I worked in the mental health services in Cork as a psychologist and I have seen the benefits of the same services in Cork adhering to our national mental health policies over the years by facilitating the reintegration of long-stay patients of institutional facilities back into their communities, including long-stay patients of Our Lady's Hospital in Cork and of St. Stephen's Hospital in Glanmire.

The proposal I will outline does exactly the reverse of that trend. I am not expecting the witnesses to take on faith what I am saying about this project here because it is not something they are likely to be aware of, but I ask if the commission can intervene in any way in a service development that is under way if it can be established that the service will represent a very serious breach of the UNCRPD. The service proposal in question is for a capital investment of €64 million in a 50-bed residential-----

Maurice Quinlivan (Limerick City, Sinn Fein)
Link to this: Individually | In context | Oireachtas source

Just before the Deputy goes any further, we have spoken about this matter before. For the benefit of the witnesses, this is a specific case, so they do not have to comment on it if they do not wish to, but they are more than welcome to comment on it if they want to. I am assuming they might not have been briefed on this matter or whatever and it might be a bit beyond their remit as well. I just wanted them to know that.

Liam Quaide (Cork East, Social Democrats)
Link to this: Individually | In context | Oireachtas source

There is a general question I want to ask that flows from it. I am not expecting the witnesses to comment on this specific case.

Maurice Quinlivan (Limerick City, Sinn Fein)
Link to this: Individually | In context | Oireachtas source

I am sorry for interrupting the Deputy. There is no problem whatsoever with the general context and the general issues.

Liam Quaide (Cork East, Social Democrats)
Link to this: Individually | In context | Oireachtas source

The reason I keep bringing up this topic is that it just feels like an unstoppable process now. The HSE is intent on pushing ahead with this project. I raised it with the National Disability Authority because it had the UNCRPD as a central focus of its presentation and I was disappointed its view was that it could only comment in general terms about the UNCRPD and not about a specific project, not just here but in terms of intervening with the Government or the HSE.

The witnesses might be aware that St. Stephen's Hospital is the location for a new elective hospital in Cork. It is a very suitable location in my view. It is also a suitable location for acute inpatient admissions for mental health because those admissions are generally short term. What is being proposed in this project is for continuing care and rehabilitation placements for people with severe and enduring mental health difficulties who require 24-hour staffed support but who have considerable potential for rehabilitation and like anybody else would want to reintegrate back into their communities. The site in question is in an agricultural area. All the land around it is zoned for agricultural use. Across the road, a site is zoned for light industry. There is not even a footpath connecting St. Stephen's Hospital to the nearest service station, which is 1.7 km away. The nearest kind of retail centre is 3 km away in Riverstown, and there is no footpath for the first kilometre of that distance. There are no community amenities within walking distance of St. Stephen's Hospital and no plans to develop any. Many of the cohort of service users who will become residents there would have mobility issues. Most or all would not drive.

This reflects a complete reversal of the trend we have seen arising out of our mental health policies as far back as 1984, when the whole concept of community living was central from then onwards. That was the Planning for the Future document and it was also enshrined in A Vision for Change and Sharing the Vision policies, the HSE's own policy for people with severe and enduring mental illness and complex needs and the UNCRPD. The Mental Health Commission has written position paper on the adverse outcomes for people placed out of their area and away from their community of origin. The Care Quality Commission in the UK has also written very critically of this practice there. By every policy and standard that we are meant to be using to plan service, this makes no sense. The only sense it makes is financial sense for the HSE to centralise many of its staffing costs in the one area on a site it owns itself. It is, however, very much against the interests of the residents who will be there in future. It will also take away a great deal of funding for what should be smaller-scale community services in towns across Cork county and city.

If what I am saying could be upheld and if it was established that all of it is fact, does the commission have any role, potentially, in advising the Government or in using any kind of soft power or even just making a comment on a proposal like this if it was brought to its attention?

Mr. Liam Herrick:

Without knowing the detail of the case, other than what the Deputy has outlined to us now, what we can certainly acknowledge is that the situation he referred to engages with a lot of core provisions of the UNCRPD and, perhaps, other rights and equality standards as well. We have a wide range of statutory functions and powers. I would be happy to engage with the Deputy further about how we can learn more about the instance and then we can explore whether any of our powers or functions may be relevant in the area. On the face of it, I can say that the situation the Deputy outlined engages with those issues and we would be happy to consider it further.

Liam Quaide (Cork East, Social Democrats)
Link to this: Individually | In context | Oireachtas source

I thank Mr. Herrick.

Maurice Quinlivan (Limerick City, Sinn Fein)
Link to this: Individually | In context | Oireachtas source

That finishes Deputy Quaide's round, which is round 1. We will go on to round 2 if anybody wants to come in.

Gillian Toole (Meath East, Independent)
Link to this: Individually | In context | Oireachtas source

I thank the witnesses for all of the highly informative replies, and colleagues for the questions they are asking. I will be blunt. Given the volume of work that IHREC currently has and pending the replies from the UN to its submission, is the organisation adequately resourced, humanly and fiscally, to deal with the volume of change, the oversight, and keeping up with future national and current international publications and practices?

Has IHREC previously engaged with each Department? Given that we are being told that there is a whole-of-government approach to disability matters and there is a specific task force within the Department of the Taoiseach, do the witnesses think there is an understanding in each Department of its legal obligations under UNCRPD?

I have a suggestion, if I may again - the Chair is going to kill me - that maybe previous disability stakeholder groups could be facilitated or invited to give us feedback. With the new Act, there will be scrutiny, oversight, discussion, etc., and it would be very helpful to hear from previous groups. If I am out of order on that, let me know.

Maurice Quinlivan (Limerick City, Sinn Fein)
Link to this: Individually | In context | Oireachtas source

The Deputy is fine. We discussed that earlier at a private meeting but it is 100% for the Deputy to talk about that. The witnesses can answer Deputy Toole's questions.

Mr. Liam Herrick:

On the question of resources for the Irish Human Rights and Equality Commission, I could make a number of points. We recognise that, in recent years, the financial and staffing resources made available to us by the State have increased, and we welcome that, but we would also repeat the point we have made to the Government that, over the last number of years, we have been given by the Oireachtas and Government a number of additional mandates and functions, but we have not always received additional funds. This week, the UN Committee on the Elimination of Discrimination against Women made a recommendation to the State that when additional mandates are given to us or any statutory oversight body that is independent, there needs to be a requisite allocation of resources. The risk is that in giving us additional functions without additional resources, it will weaken our capacity to do our job. We welcome those additional functions, such as being an independent monitoring mechanism for the rights of people with disability, or being an independent rapporteur on the State's application for human trafficking, and we hope to have other functions in the future with regard to artificial intelligence and detention.

On the question of the integration of UNCRPD across Departments, it is probably early for us to make an assessment of whether the new task force run out of the Department of the Taoiseach is going to be an effective mechanism but I would point out that, under our founding statute, all public bodies, including Departments and State agencies, have a statutory obligation to integrate human rights and equality into their policies and practices. We monitor the fulfilment of that obligation by all public bodies. They have to integrate human rights and equality into their strategies and we have to see it being put into effect. What we are seeing across all human rights and equality standards is an improvement and there are more bodies coming in line all the time. There is progress but still less than half of all public bodies are fully complying with their obligations. There is work to be done but there is progress at the same time.

The disability-specific question is probably difficult to assess at this time. We are all conscious that the national strategy has not been published. It makes it difficult to see even an overall framework for such integration.

Margaret Murphy O'Mahony (Fianna Fail)
Link to this: Individually | In context | Oireachtas source

The national disability strategy that is forthcoming is obviously a pivotal moment for reform and it is very welcome. How will this strategy be structured to deliver on rights and not just on ideas or aspirations, and who will be held accountable for measurable outcomes?

Mr. Liam Herrick:

In a way, that is a question that is perhaps best directed to the Department of Children, Disability and Equality. We have certainly made recommendations, as Dr. Elliott has already outlined, that the strategy would be grounded on measurable outcomes and there would be accountability within it. We have made offers to play a role in that monitoring, which there has not been a final resolution of yet. Ultimately, that is a matter for the Government and we do not have a decisive role in what the outcome of that process will be.

Margaret Murphy O'Mahony (Fianna Fail)
Link to this: Individually | In context | Oireachtas source

Okay. Maybe this one is not appropriate for the witnesses either. There are stories we have heard lately about children with additional needs being secluded and restrained in schools, which is obviously very hard on the pupil, the parents, the staff and the other children in the school. In the witnesses' opinion, what changes are required to eliminate these practices and to enshrine the child's right to inclusive, safe and welcome education?

Mr. Liam Herrick:

That is certainly an issue we are very aware of. What I can say at this point is that we are in ongoing engagement with the Department of education on this question. As the Senator knows, guidelines on challenging behaviour were published last year. The Irish Human Rights and Equality Commission, along with the Ombudsman for Children and the special rapporteur on child protection, has raised some concerns about what is proposed with respect to questions around, for example, adequate training for staff in schools, adequate recording of instances for seclusion and restraint are used, and an effective independent complaints mechanism in such instances. We have raised those concerns with the Minister for education and requested a meeting with her. We hope we will have further engagement. There has been some indication of a willingness to engage and we hope that can be constructive. The Senator is correct. There are some concerns in that area that are very live.

Margaret Murphy O'Mahony (Fianna Fail)
Link to this: Individually | In context | Oireachtas source

Yes.

Mr. Liam Herrick:

It is with particular regard to children with disability. It affects other children, too, but it disproportionately affects children with disabilities. Dr. McDonagh wishes to say something.

Dr. Rosaleen McDonagh:

This issue has a long, long history for IHREC. The overdiagnosis of Traveller children and children from new communities is very worrying. It is also very worrying that there are no standards of training in place and if they are, they are on an ad hoc basis and are not mandatory, although I think there is very little care or concern given to those children going through the trauma of being locked in a room for two hours on a Monday morning.

For another generation, education is failing and abuse becomes part of its narrative.

Martin Daly (Roscommon-Galway, Fianna Fail)
Link to this: Individually | In context | Oireachtas source

I apologise for being late. I was attending the health committee, which occurs at the same time as this one. I thank our witnesses for coming in today. I am struck by the commission's report, which states we have signed up to international obligations in the area of disability. The areas of concern are areas we thought we had consigned to history: institutionalisation, congregation and the abuse of people living with disability.

I have just come from the health committee, at which Safeguarding Ireland pointed out the endemic, widespread nature of adult abuse. One of the areas of that adult abuse concerns people living with disability. We tend to narrow it down to institutional care such as nursing homes, but the vast majority of abuse is occurring in the community, perpetrated by people who are known to the victims; sometimes relatives, friends, carers or neighbours. We spoke about the need for a safeguarding authority. This would begin with updating safeguarding legislation, and would be followed by the establishment of a safeguarding authority, which would have an overarching responsibility for safeguarding. There is no one door to go through if there are issues of abuse within the community. It is fragmented. It involves the HSE, An Garda Síochána and other institutions but there is no joined-up organisational approach to it. Having come from the health committee, I wish to ask our representatives about their views on safeguarding people living with disability in the community.

Dr. Iris Elliott:

I thank the Deputy for his question. We previously had a question on safeguarding. From our point of view, the most important thing is that there is a system that is co-ordinated rather than fragmented. We raised concerns about the fact that safeguarding is often located within the health services even though, as the Deputy rightly says, a lot of safeguarding or abuse issues happen in community settings. Therefore, there is a need for an integrated system of protection. We are concerned that locating safeguarding solely in health means others do not engage and identify what they can contribute.

The other concern with retaining safeguarding within a health construct is that it is a perpetuation of the medicalisation of disability. Any system of safeguarding needs to be human rights and equality compliant. One of the things we will encourage in any forthcoming legislation or policy is that it would need to be considered in pre-legislative scrutiny. IHREC has contributed previously when new institutions have been established. We did a review from a human rights and equality perspective in partnership with the Electoral Commission and Cuan. We are very much open to providing support to the Oireachtas around that.

Dr. Rosaleen McDonagh:

I would be hopeful that independent advocacy would be recognised and enforced.

Mr. Liam Herrick:

There are many different dimensions to it, but I will pick up on the point about access to justice, a right to independent advocacy and ensuring that complaints are always recorded and responded to. It is a question for professional bodies to ensure that when staff in a particular category are the subject of a complaint, they are properly disciplined as part of the disciplinary process. Dr. Elliott mentioned earlier that the phenomenon of non-prosecution of offences, particularly against people with intellectual disabilities, raises questions about all stages of the criminal justice system. When An Garda Síochána and the DPP do not proceed with prosecutions for various legal reasons, people are denied justice. The lack of legislation on incitement to hatred, which Dr. Elliott already mentioned, is relevant, as is the prosecution of hate crimes against people with disabilities. There are many different dimensions to this. The Deputy is absolutely right when he says that a comprehensive system is needed.

Martin Daly (Roscommon-Galway, Fianna Fail)
Link to this: Individually | In context | Oireachtas source

I have run out of time, but I would like to comment that it appears to me that there is a two-tier system of safeguarding. While rights for children are regulated by Tusla, we do not have the same rights for adults of all hues: those of older age, those who live with disability and those who are vulnerable. I take the point that it should be a justice-based thing. If you are breaking the law, you are breaking the law.

Maurice Quinlivan (Limerick City, Sinn Fein)
Link to this: Individually | In context | Oireachtas source

I thank Deputy Daly. I apologise for the electricity going again. I am not sure what is happening with that. We have had a number of outages this morning. Senator Maria Byrne of Fine Gael has five minutes.

Maria Byrne (Fine Gael)
Link to this: Individually | In context | Oireachtas source

I apologise that I was not here earlier. I am on the health committee as well. I had to go there first. I have two or three questions.

I raised the first of them with the Minister when she was here last. It relates to a young person with a disability who previously lived with a family member, but that is no longer possible. That young person lived in Limerick in their family home and worked in the services. They went on a daily basis to one of the workshops and they were really happy while engaged with their own community. That young person has now been moved to Tipperary. While we cannot have residential accommodation on every street corner, this person been moved totally away from all their friends, their family, their connections and their workshop. Do our witnesses see any improvements coming in that area?

Another thing is the lack of appropriate housing and supports. There were units built near me which were mainly for wheelchair users. As there were no support staff and no supports going in there, many people ended up moving out to live nearer to family or friends for support. IHREC has called for a review of the Disability Act. The programme for Government commits to this and to a review of the legislation as well. Will the witnesses comment on that?

Mr. Liam Herrick:

We are not familiar with the details of the individual case, but it engages with two questions that are integrated throughout our report, the first of which is whether questions about the design of services properly take into account the impact the design of those services will have on the rights of people with disabilities. The second question is whether, when decisions are taken which affect somebody, that person has the right to consultation and participation in those decisions. It is a constant pattern we see that services are designed around questions of organisational necessity, efficiency and so on, but are not properly grounded in respect for the right to independent living, family life and so on. When decisions are taken that have a huge and sometimes devastating impact on the quality of life of an individual and a family, there is not a proper regard to the need to listen to that person, engage with them and find an appropriate solution. Without knowing the specifics, these are general points that come up at all stages in our report.

On the question of housing and where housing may be provided and the lack of staff, one of the key points we make in our report is the central function of personal assistants in vindicating rights to independent living and rights more generally.

The right to a personal assistance service that engages with all aspects of somebody's life, not just going to school or work but the totality of their life, is a major problem. We have called for a review of the Disability Act. We do not yet have visibility of what the parameters might be. We have sought engagement with the Minister for children, disability and equality on this and other issues. We have made a number of submissions about what we feel the parameters should be for such a review. We do not have a sense of that yet.

Maria Byrne (Fine Gael)
Link to this: Individually | In context | Oireachtas source

If it is appropriate to do so, will the witnesses highlight the top three or four things they think should be in it? What would the commission like to see happen?

Dr. Iris Elliott:

In any review of legislation, it is about ensuring disabled people and disabled persons' organisations are part of the review. There is clear guidance around how that should happen from the UNCRPD committee. It would be a systematic review that is evidence based and publicly reported to allow for transparency as to how it was conducted. The Disability Act is quite specific and limited and predates the CRPD. We encourage fundamental questions about the purpose of the Disability Act, and that the review is guided by that policy intent. If we are clear about that, it may be that the review of the Act needs to connect with the review of other legislation. If it is only for a certain policy purpose, we need to look at other aligned legislation, including equality and other legislation.

Liam Quaide (Cork East, Social Democrats)
Link to this: Individually | In context | Oireachtas source

The Government has indicated that it intends to review the Disability Act 2005 and that it sees the current assessment of need process as hampering its ability to resource therapies for children with additional needs. That intention is creating a lot of concern among families, advocacy groups and clinicians. There are children who would benefit from low-intensity or short-term intervention for whom it is not necessarily in their interests to receive a diagnosis and who would benefit from a therapeutic assessment followed by timely intervention by primary care services. Such services have been chronically under-resourced and most have long waiting lists. Some of these children are getting stuck in the assessment of need pathway for a prolonged period and are then left waiting for therapies that may never materialise. Notwithstanding that, there is a great deal of concern that the one right children have under the disability legislation will be watered down. The right to an assessment of need is something of a dead end when it is not accompanied by a right to intervention. Does the commission have a view on the legal right to an assessment of need and the possible legal right to intervention? Is this something the commission is considering in light of the narratives relating to this matter?

Mr. Liam Herrick:

I think this came up earlier. We will be very clear. The right to an assessment of need is fundamental and central. If there are difficulties with waiting lists and the historic lack of investment in the system, they need to be addressed. There is also a need for a right to services resulting from it. I draw the committee's attention to the fact that this is a matter in respect of which we have intervened in cases before the courts. A case went to the Court of Appeal in which we intervened as a friend of the court. It was found that the standard operating procedures used by the HSE where somebody might get an assessment of need but not have a diagnosis, where that was necessary and appropriate, was deficient and not consistent with existing rights and obligations. In our view, any question of diluting the right to assessment of need would be misplaced.

Dr. Iris Elliott:

To speak as a mental health clinician, there has been a real problem in that the Disability Act precedes the CRPD. It is not compliant with the convention. Part 2 has always been problematic. I was involved in the development of that legislation and in trying to negotiate with the Department at the time. There has been a development of a very complex system around assessments of need. Practice has evolved since 2005. I would imagine that Part 2 of the Disability Act does not necessarily reflect good practice fully. The main concern is the right to assessment of need and provision of services in a timely and proportionate manner, including a preventative approach with early intervention, leading to potentially not needing more complicated services later on. It is also about recognising that although this is focused on health support services, if you do not have them, the impact on children's education and life chances is significant and that there is an impact on families and carers if there are additional requirements. It has a huge ripple effect. We encourage investment in this system and that the system should reflect current good practice, informed by rights holders and their family members. There should not be an argument in a wealthy society that we do not have adequate resources. That clearly has been set aside by the UN and is not persuasive.

Dr. Rosaleen McDonagh:

On the UN and the previous question, if we do not develop a rights-based ideology regarding disabled people, be it in the context of children, needs assessments or other relevant areas, rights-based ideology, legal systems and the way we plan and deliver services will not represent value for money if the child and rights-based formula is not in place.

Laura Harmon (Labour)
Link to this: Individually | In context | Oireachtas source

I have a question I did not get to ask earlier. The witnesses spoke about the impact on people of the lack of housing, supports and services in local communities in terms of their being able to live their lives fully and independently. Will the witnesses expand further on the report in that regard and on the impact of the housing crisis on this issue?

Dr. Iris Elliott:

I draw the Senator's attention to the commission's well-established position regarding an ongoing concern about the fact that universal design and the public sector duty have not been fully implemented in addressing issues around housing support services. There has been a need to focus on the development of a right to personal assistance. It is about having a fresh approach to what support services are required. We have an ongoing concern about the fact that the current approach of relying on the market to deliver a human rights and equality-based approach in respect of housing supports and services simply does not deliver a result for disabled people.

Dr. Rosaleen McDonagh:

We hear about young professionals, non-disabled, who are living at home with their families into their 30s and 40s. We also hear of people, particularly women, in their 50s and 60s who are renting. We never hear the narrative around that experience for disabled people. We are either shoved into overcrowded nursing homes or some of us have a minimum of two or three hours of personal assistance support throughout the day.

That might mean an hour in the morning, a half hour at lunchtime and half an hour at bedtime. I have not met anyone live a life like that. Then there are problems around the housing. It gets more intense and more dangerous and people are more vulnerable when we move outside Dublin where access to appropriate housing is less. Not to overstate the obvious, but there are wasted lives. These are people in their early 20s who should be out working, living, having productive, happy lives and having opportunities.

Mr. Liam Herrick:

This is a subject that came up at our disability advisory committee very recently. Sometimes we view this question from a bricks and mortar perspective – the type of housing units we build and provide but, as Dr. McDonagh said, a theme that came up quite a bit was that it is all contextual in relation to the level of supports somebody has. If somebody had adequate personal assistance support they may be able to live in a shared setting with friends, peers or family members but the lack of personal assistance support narrows the options available. In a worst-case scenario we end up in a situation which many members of the committee identified with the use of nursing homes for young people. It is not just a housing question but housing in the context of what reasonable accommodation and supports are available.

Dr. Rosaleen McDonagh:

Also with all variable institutional accommodation, that mentality can happen in overcrowded bedrooms of a house or in a an eight-bed room or ward in a nursing home. It is really serious and dangerous and opens up all sorts of loopholes for abuse and violence.

Tom Clonan (Independent)
Link to this: Individually | In context | Oireachtas source

I thank the Chair for allowing me to come in a second time. I want to apologise. I am on the health committee, which is why I have been coming and going.

I will pick up where we left off and the first principles of legislative rights for disabled citizens. I am concerned that the only legal right disabled citizens have at the moment is the legal right to an assessment of need and I hear a growing narrative from the Minister of State, Deputy Naughton, and the Minister, Deputy Foley, that that legal right to an assessments of need is causing a problem and that it is generating a demand for assessment of need. Earlier this year, the Minister of State said on “Ireland AM” that when assessments of need were carried out they even found that some people did not have complex needs and therefore it was a waste of an assessment of need. I find that language quite alarming. Yesterday, Cara Darmody was in the audiovisual room with Deputy Cullinane and they also expressed that fear that with the prospect of 25,000 children waiting on an assessment of need by the end of 2025, the Government may introduce legislation to remove that right. Is this something the witnesses are concerned about? Is it something they are aware of?

I introduced legislation which I hope to bring to Report and Final Stage before Christmas. It would make it a legal right for every disabled citizen to have all the personal assistance, the surgeries, interventions, social supports, housing and whatever that is set out in an assessment of need as is the case in other jurisdictions. The witnesses mentioned that we need to introduce reform on a legislative basis to bring Ireland in line with the UN convention and with other areas. There are two parts there.

Mr. Liam Herrick:

We can be brief. That very much mirrors the question just raised by Deputy Quaide. We are very clear that assessment of need is a fundamental right that is an essential element of the process. If there are waiting lists due to historic lack of investment that does not excuse a dilution of the right. My colleague, Dr. Elliott, has talked in some detail about how there may be a case for improvement and enhancement of process around assessment of need to bring it in line with current best practice and improvement of the process as part of an increased investment in the process. This is a matter where we have been in the courts where we have been an amicus curiae in court proceedings about assessment of need. It is a matter that has gone to the Court of Appeal on the question of whether a diagnosis needs to be part of the assessment of need. We are very clear that there can be no dilution or diminution of that right.

With regard to the matters identified in the Senator’s Bill, they are also questions that are addressed in our report. The objectives of the Bill are ones that we share. If the Bill advances, we have a number of statutory functions to advise the Government and the Oireachtas on legislation and their compliance with human rights standards, so if the Bill advances that may be something we may be able to engage with.

Dr. Iris Elliott:

To add to that, it is well established that disabled people, their families and carer system often experience heightened levels of poverty. There is great concern about a business that has developed around assessment of need where people have to pay for an assessment of need in order to even be in the ballpark of accessing support services. That is a concern for us in terms of people’s economic rights. We recently did the report on cost of disability and assessment of need has started to become part of that cost of disability in terms of accessing support services. The absence of a right to support services, as we just said, puts limits on people’s participation in their communities and access to education and employment which also has economic impacts on the person and their family members too.

We have just made a submission to the forthcoming successor strategy on the roadmap to social inclusion which we can share with the committee. We are asking for an anti-poverty strategy that would specifically look at the cost of disability, etc.

We are also concerned about the process of assessment of need and the very formal, high-level assessment of need moving towards diagnosis when everything the UNCRPD is about is trying to shift from a medical model of disability yet to even get access to very basic services, people have to be diagnosed with particular conditions. It is not an agile, time-sensitive, proportionate access to services. I would raise the concern that this is about the design of an assessment system that enables people to have the right to support services.

Tom Clonan (Independent)
Link to this: Individually | In context | Oireachtas source

On the issue of the medical model, Ireland is so much an outlier that we do not even meet the basic threshold for compliance with the medical model. We have children who cannot get routine surgeries. I have noticed that some Government figures have begun to mobilise the medical model as a way of saying, "That is the medical model” or "Diagnosis is a bad word" but we are not even there when it comes to really life-changing, life-limiting and life-altering consequences for disabled citizens. Obviously, the social model and a holistic approach is what we are all striving for but I have heard the language around the medical model being mobilised as a sort of smokescreen to deflect from the abject lack of services.

Other jurisdictions are able to provide assessments of need several times in the developmental life of a child, teenager and adult. They provide multiple assessments of need. Some jurisdictions do an assessment of need every two or five years, and they provide the services and supports that are set out. The Government is trying to create a narrative of a mutually exclusive notion that we cannot have an assessment of need and services and that it is either one or the other. I cannot think of a better phrase for that than "properly bonkers".

Dr. Rosaleen McDonagh:

My worry is what happens to the child or adult while they wait on the assessment. Services in education are needed. There is a need for assessment. There are children with multiple needs, be they Traveller children or children who do not speak English as a first language. Sometimes the lack of assessment is used as part of an exclusionary, discriminatory practice.

Maurice Quinlivan (Limerick City, Sinn Fein)
Link to this: Individually | In context | Oireachtas source

We are now out of time. That concludes our contributions today. I propose we publish the opening statements to the committee's website. Is that agreed? Agreed.

Dr. Rosaleen McDonagh:

For the record, I was late because the taxi was not accessible. That is one minute example of how a disabled person’s daily lives are affected by an environment that is not accessible. I am here to do a job. I was delayed through something outside of my control.

Maurice Quinlivan (Limerick City, Sinn Fein)
Link to this: Individually | In context | Oireachtas source

If we ever needed a demonstration of some of the issues that people face, it was the fact that Dr. McDonagh was not able to get the services she needed to get her here for this meeting this morning. We were all conscious of that. I thank Dr. McDonagh for coming and contributing, as the other speakers also did. I wish to put that on public record. When Dr. McDonagh came through the door to this room, which is supposed to be the most disability-friendly of the committee rooms in the Oireachtas, I realised it is not friendly either, and that is something I will take up later. We learn as we go along, every single day. It is important that we acknowledge that as well.

I thank the witnesses for coming. With members’ agreement, we will go into private session to deal with housekeeping matters.