Oireachtas Joint and Select Committees
Wednesday, 20 September 2023
Joint Oireachtas Committee on Disability Matters
National Disability Inclusion Strategy: Discussion
Michael Moynihan (Cork North West, Fianna Fail)
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Apologies have been received from Senators Seery Kearney and McGreehan.
The purpose of today's meeting is to discuss the national disability inclusion strategy, NDIS. On behalf of the committee, I warmly welcome Ms Renee Dempsey-Clifford, independent chair, and Mr. Dharragh Hunt, secretary, from the Disability Stakeholder Group, DSG, and Dr. Aideen Hartney, director, and Dr. Rosalyn Tamming, head of policy, research and public affairs, from the National Disability Authority, NDA.
Before we begin, witnesses are reminded of the long-standing parliamentary practice that they should not criticise or make charges against a person or entity in such a way as to make him, her or it identifiable or otherwise engage in speech that might be damaging to the good name of a person or entity. Therefore, if witnesses' statements are potentially defamatory and they are asked to discontinue their remarks, it is imperative that they comply with such direction.
Members are reminded of the long-standing parliamentary practice to the effect that we should not comment on, criticise or make charges against a person outside the Houses in such a way as to make him or her identifiable. Members must also be within the precincts of Leinster House if they are participating remotely.
I invite Ms Renee Dempsey-Clifford to make her opening remarks.
Ms Renee Dempsey-Clifford:
I thank the committee for inviting me to speak on behalf of the DSG. Before I address the questions the committee asked in its letter of invitation, I wish to explain what the DSG is and what my role as independent chairperson involves. The DSG is a voluntary group of individuals who were appointed by the Minister following an open application process in 2021. The DSG’s function is to monitor the NDIS and to contribute to the development of its successor strategies. There has been a DSG in existence since the publication of the first national disability strategy in the early 2000s. The current DSG is the sixth iteration of the group and has 23 members. The members participate in the DSG as individuals with expertise and lived experience of disability, academics, work or voluntary professional experience, or any combination of relevant factors. The membership currently comprises disabled people, family members, people who are members of disabled persons organisations, DPOs, umbrella bodies and service providers. Indeed, some members probably wear more than one of these hats. It is particularly important to note that the DSG is not an advocacy, issue-based or lobbying group.
My role in the DSG is that of independent chairperson. This role is a voluntary position. The chairperson is appointed following a call for expressions of interest. In my role as chairperson, I work with the DSG by facilitating discussions and helping the group to reach positions.
The NDA provides the DSG with secretarial and administrative support - Mr. Hunt is present with me today - which ensures good organisation and record keeping, as well as other supports. This is very much appreciated by the DSG.
I will use the remainder of my opening statement to respond to the specific questions the committee asked in its letter of invitation, the first being the development of a new UN Convention on the Rights of Persons with Disabilities, UNCRPD, implementation strategy to succeed the current strategy. The DSG believes the principles of mainstreaming, participation and evidence should underpin the next disability strategy, which should be a UNCRPD implementation strategy. Regarding mainstreaming, the DSG wishes to highlight that, in its experience, this term is not always clearly defined or understood by all. It is crucial that there be a shared understanding among all stakeholders of what is meant by mainstreaming. The DSG sees it as wider than inclusion and places self-empowerment, self-determination and equality as central to the process. Mainstreaming has human rights at its core, and for it to be realised, it must have political commitment and leadership at the highest level that are cascaded down to all members of the public service.
Regarding participation, the DSG believes that every opportunity should be taken to capture and utilise the lived experiences of disabled persons in the implementation of the convention in Ireland. It is crucial that DPOs be involved in the UNCRPD implementation strategy consultation process from the outset and in the monitoring of the strategy once it is agreed, as per Article 4.3 of the UNCRPD. The importance of other stakeholders, particularly those with lived experience of disability, being involved in the process must also be recognised, as not everyone who is a stakeholder is a member of a DPO.
Regarding evidence, the DSG wishes to highlight the importance of considering the type of evidence that is included. This includes outlining distinctions between medical model research focused on individual impairments and evidence about barriers to inclusion that people face, which reflects a social model approach.
The DSG believes it is vital that the convention become the overarching strategy for disability policy. A UNCRPD implementation plan, rather than a new national disability inclusion strategy, changes the context. An understanding across the Government of the obligation that the convention places on Departments and agencies is critical to achieve the buy-in and change that are needed to realise the rights of persons with disabilities, which will enable them to live their lives as independently as they wish.
In this regard, it is the shared experience of the DSG that the commitment to delivery of Government policy on disability can be a mixed one from Departments. Some Departments clearly accept the obligations placed on them and their agencies and press to deliver the actions with ambition and willingness. They identify barriers and are constructive in seeking solutions. They clearly accept the disability policies and actions that apply and, through regular and timely meetings, ensure continuity of delivery is supported.
Unfortunately, this is not a universal experience, and some Departments are seemingly disinterested, or occasionally indifferent, to this Government policy. Personnel changes can also be deeply influential in the level of commitment experienced by the DSG, as evidenced in setting dates for meetings, adhering to them, focusing on the actions applicable and ensuring DSG members have relevant materials sufficiently in advance of meetings.
In this context, it is the view of the DSG that, without clear obligations and answerability being placed on heads of Departments and agencies to take on the delivery of Government commitments and policy on disability, including meeting obligations under the UNCRPD, the mixed and patchy responses and inertia experienced by the DSG will continue. Given the number of people with disabilities in our society - more than 21% according to the 2022 census and undoubtedly likely to be higher when the next census is published - the DSG regularly struggles to understand how the importance of meeting Government commitments towards people with disabilities can be placed as a relatively low priority by some Departments and agencies.
From the DSG's experience of monitoring the current strategy at departmental level, the DSG would observe that some Departments have established well-functioning monitoring structures called disability consultative committees, DCCs, while others have not succeeded in doing so. There can be a lack of alignment between Department-level reporting and the strategy's overall commitments. The DSG has suggested that improved reporting by DCCs on their Departments’ targets and outcomes by providing an annual report would improve accountability. The DSG has advised that it would help DCCs to operate more effectively if Departments better understood the DSG itself and the reasonable accommodations required for members to participate in meetings. It would also help if Departments had a better understanding of the role of DPOs and had a better balance of disabled people represented on their DCCs, with a clearer understanding of the different role that service providers play.
I will not speak for too much longer.
There has been a lack of progress and action since the previous strategy closed at the end of 2022. It is fair to say the DSG is frustrated with the slow pace of consultation on the new strategy. The DSG has a good working relationship with the Department of Children, Equality, Disability, Integration and Youth, which is the lead Department, and we recognise the challenge of developing a strategy that adheres to the UN convention. However, there is a sense in the DSG that the development of a new strategy is not the priority it should be for the Department. The previous strategy was extended from 2021 to 2022 in order that a successor strategy could be developed. However, we have found that, to date, the pace of the consultation process and the model of consultation for developing the new strategy have not met expectations. The consultation is currently at a stage where it is focused on how a strategy could be developed rather than discussing the content of the strategy. Unless the model of consultation for developing a new strategy can properly accommodate all stakeholders, particularly DPOs, there is a risk that progress will remain slow. Having said that, the DSG recognises that all participants must support the process through consensus building, collaboration and willingness to progress.
Given that not all actions under the NDIS were completed, the DSG advised that the national departmental monitoring meetings should continue until such time as a new strategy is published and new monitoring structures are established. However, those meetings have been discontinued. The DSG believes this is a missed opportunity for meaningful progress to continue.
The DSG has sought clarity as to whether the term of the current DSG membership will be extended until the new convention strategy is developed. To date, the lead Department has not provided that clarity. Consequently, we now have a hiatus that has sidelined the monitoring process, leaving DSG members without the role and function they volunteered for and were appointed to perform.
There must be action to enable effective cross-Department collaboration for the new strategy in order for it to make progress and to impact positively on the lives of disabled people. The convention needs to be understood as a shared goal by all, that is, Departments, State agencies, service providers and local authorities. There must be leadership on, and accountability for, delivery of disability policy at all levels.
I thank the Chairman for allowing me to make this statement on behalf of the DSG. I am prepared to answer questions members may have.
Michael Moynihan (Cork North West, Fianna Fail)
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I thank Ms Dempsey-Clifford. I invite Dr. Hartney to make her opening statement.
Dr. Aideen Hartney:
The NDA thanks the Chairman and the members of the joint committee for the opportunity to discuss today's topic. I am joined by Dr Rosalyn Tamming, who is our head of policy, research and public affairs.
The NDA provides independent and evidence-informed advice to the Government on policy and practice relevant to the lives of disabled people. We incorporate a Centre for Excellence in Universal Design, promoting the design of physical and digital environments that can be accessed, understood and used by everyone, regardless of age, size, ability or disability. The NDA has been a member of the steering group convened to monitor progress on the NDIS since its launch in 2017. We have prepared an annual independent assessment of progress on the strategy, informed by our research and engagement with a wide range of stakeholders, including DPOs, individuals, family members and other relevant bodies. We have also published two reports on progress against a series of indicators designed to measure the impact of the strategy over its full lifetime. We are pleased the committee has found our reports useful in supporting its work to date. We suggest that the most recent assessment, covering the end of the strategy's lifetime, offers a sense of areas for focus in the development of a new CRPD implementation strategy.
Over the five years of the NDIS, much progress has been made by way of new legislation, policy and programmes relating to the rights of disabled people. Several pieces of legislation have been enacted or progressed, including the Irish Sign Language Act 2017, the Assisted Decision Making (Capacity) (Amendment) Act 2022 and the Criminal Justice (Incitement to Violence or Hatred and Hate Offences) Bill 2022. However, progress under a number of actions has been slower than hoped, including the move away from congregated settings and the demonstration project on the provision of personalised budgets. There has been no agreement on the final action plan of the comprehensive employment strategy, which runs to the end of 2024, and there remain significant issues around the timely delivery of multidisciplinary disability services for both children and adults. Disabled people on the NDIS steering group, through the DSG, have indicated that even where some commitments are marked as having been delivered by Departments, this has not always translated into improved experiences in their day-to-day lives. They also point to continued challenges in building awareness and positive attitudes to disability across government and within society, in spite of a number of initiatives progressed in this regard.
Delay in the development of a CRPD strategy has resulted in a significant loss of momentum in delivery of improvements in the lives of persons with disabilities. There was no approach agreed as to how actions designated as incomplete or delayed might be progressed following the end of the NDIS. Equally, where progress has been made, we lack mechanisms for ongoing review and evaluation to establish the impact of such developments. The majority of disability consultative committees established to allow stakeholders to provide perspectives on progress under the strategy at departmental level are no longer meeting.
While the absence of a mechanism to drive delivery of specific actions is concerning, it should not be the only way of ensuring Departments deliver on obligations under the CRPD. With census 2022 figures showing that more than 21% of the Irish population reporting as having a disability to some or a great extent, it is clear disability cannot be considered the siloed responsibility of a single Department or an equality ground requiring only specialist responses. In keeping with the UN convention and the Disability Act 2005, all Departments and public bodies should be giving consideration to how their mainstream services and supports are disability-proofed and where they might need to introduce more tailored supports in the domains within their remit.
A number of activities are continuing. This year saw the publication of the action plan for the housing strategy for disabled people. We are expecting publication this month of the disability action plan for health and social services and the roadmap for children's disability services. The Department of Social Protection recently published its review of the reasonable accommodation fund, and reviews of other payments are under way or planned. In the NDA, we are finalising a code of practice on accessible public buildings. We also expect the national data equality strategy to be published this year.
We previously discussed with this committee how the Disability Act provides for sectoral plans, requiring Departments to set out and report against action plans to address the service and support needs of disabled members of the public. The renewal of sectoral plans could be a deliverable under a new CRPD implementation strategy to ensure the translation of high-level goals into the specifics of service delivery. Their development could also give Departments a clear roadmap to guide ongoing activity aside from commitments in a specific strategy.
The NDA recognises that work to develop the successor strategy was impacted due to unforeseen challenges, including the Covid-19 pandemic and the war on Ukraine. While these events were unprecedented, we may face similar challenges in future. We advise that the State should take measures to ensure such external shocks do not impact on the realisation of rights for disabled people. Meaningfully including disabled people in decision-making is one way in which to mitigate against this.
We recognise the recent work progressed by the Department of Children, Equality, Disability, Integration and Youth to engage with various stakeholder groups, including DPOs, in consultation on key themes and processes relating to the implementation strategy. However, the responses to these efforts from the disabled community have shown that further work and time are required to ensure a genuinely co-produced strategy. This would include securing a shared understanding and collaborative approach to the strategic planning process, as well as negotiation around themes for inclusion in the content. We recognise the challenge in balancing these requirements against the desire for a strategy to fill the current gap, but we suggest the time is taken to achieve an instrument that has the buy-in of all stakeholders and has the best chance of achieving the ambition of the UN convention in an Irish context.
While the Department is leading the co-ordination of the process to develop a CRPD implementation strategy, there will be obligations and expectations for all Departments and their aegis bodies in the delivery of an inclusive society. The NDA hopes to be part of the processes to agree monitoring and reporting mechanisms that can ensure accountability for actions committed. We have offered advice on potential structures that might apply. We recognise that ministerial leadership of monitoring committees can be very powerful, but it will be important such structures are devised to allow maximum focus on collaborative solution-finding where challenges arise, rather than more linear reporting, and that Departments and agencies engage at an appropriately senior level. We suggest that considering mechanisms to foster and allow time for cross-departmental collaboration will be an important part of the process to develop the new strategy, as this was a key challenge during the lifetime of the NDIS and other equality strategies.
We also advise that committees like this one will have a role in providing oversight at government level. The coming weeks and months will see further work advanced to consult and engage with DPOs and other stakeholders to inform the UNCRPD implementation strategy. If this process is to reflect the goals of the convention, there should be a partnership approach between officials, DPOs and disabled people and this will take time to achieve. The NDA notes that the departmental team is fully aware of this and is working to consider approaches that will balance this requirement with the need to ensure continued momentum in realising the rights of disabled people. The NDA looks forward to supporting them and other Government colleagues in this endeavour. I thank members for their attention. I am happy to take any questions.
Michael Moynihan (Cork North West, Fianna Fail)
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We will now go to our first speaker, Deputy Dessie Ellis.
Dessie Ellis (Dublin North West, Sinn Fein)
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I thank the DSG and the NDA for their presentations. They were very enlightening. The delay in the development of the UNCRPD strategy has led to a slowdown in the delivery of improvements for people with disabilities. That is fairly obvious. Ireland ratified the UNCRPD in 2018. There is a commitment to ratify the optional protocol but it is contingent on the State being in a position to meet the obligations involved. There is obviously a cost. Whether different Departments can deliver or otherwise is key to why we have not advanced as we should have. The protocol should have been ratified. The DSG, from what I can gather, believes that the overarching strategy for disability policy is through the implementation of the UNCRPD and not through a new disability inclusion strategy. That is fairly clear. Does it believe in pushing ahead with the ratification in order to push people into taking actions? We had this argument with the Department. We are told it is being pushed out further and further because of doubts about whether the different Departments can implement it. If we pushed ahead, as other countries have done, and forced the Departments to undertake the necessary actions, is that seen as an option or is that the way forward?
Can the NDA discuss why the NDIS was not extended to the end of 2023 to ensure there would be no gap in disability policy for 2023? It seems strange not to see out the year and have a proper strategy in place. No meetings were arranged in order to discuss this. It just seems to be left in limbo towards the end of this year. The NDA is finalising a code of practice on accessibility of public buildings. Will it give us an insight into this?
In the DSG, are all groups of disability represented? Is more engagement needed with DPOs and other stakeholders or is that covered? We are told that 21% of the population have some form of disability. That is massive. While our progress has been good in general, and much progress has been made, but we are now stalled by inaction.
Ms Renee Dempsey-Clifford:
I am happy to answer. At least one of the questions was addressed to the NDA and obviously it will speak to that matter. I will take the questions in a slightly different order, if that is okay. Regarding the question on whether all groups and DPOs are covered in the DSG, the way in which the DSG was appointed was that a call for expressions of interest was advertised. Something in the order of 80 individuals, groups, or DPOs applied. A selection process was arranged, in which I was not involved because I am independent. That brought those numbers down to about 23 people. The terms of reference for the selection group, as I understand it, was to try to meet exactly the point made by the Deputy, which is that individuals with disabilities, parents of adult children with disabilities, advocates, academics and so on were captured. It would be a reasonable answer to say that it seems to be well captured. No doubt there would be criticisms from individuals who might feel that their disability is not there or whatever. These things are outside my immediate remit but it would be fair to say that of those who applied to be participants in the disability stakeholder group, DSG, the cross cutting of the disability community was reasonably well met. That was the target. Certainly on the committee itself, there are some DPOs, some service providers and indeed a number of individuals with personal disabilities who participate and have the expertise of the lived experience.
On the question about why the NDIS was not extended, I do not know is the quickest way I can put it. I am not speaking for the DSG when I say this but continuing it would have enabled the continuing monitoring of the strategy to be facilitated. Indeed, I said in my statement, which was approved by the DSG - it is not my spontaneity here but is very much an authorised statement - that it clearly believes that perpetuation of the old strategy would have enabled it to continue in its voluntary role. Bearing in mind that the term of appointment is three years and we are in the second half of the second year already, it is saying it is a case of spinning our wheels. The job we volunteered to do, namely, monitoring, is absent. Of course, the job of contributing to the development of the next strategy is not absent. We are working in that direction. The group is not idle. It is just that the monitoring role, which it sees as identifying the delivery and the forward movement, is now no longer there. That is regretted, as has been made clear at other meetings as well as in this forum.
On the question of the optional protocol, with absolute respect Deputy I have to say that it is not a question that the DSG addressed, so I cannot answer on behalf of the DSG, although I hear the points the Deputy made.
Dr. Aideen Hartney:
I thank the Deputy for the questions. In regard to the optional protocol, our previous advice was that while it is an important goal and is certainly an important mechanism for states to be held accountable for commitments they may not have met, it is to be triggered only when all national remedies have been exhausted. Those national remedies are still available for people with disabilities. In the meantime it probably should be an action or a key priority under the development of a new UNCRPD implementation strategy that the State would move to ratify at the earliest opportunity. Progress has been made on some of the issues that were being put in place to allow for ratification. Hopefully, that progress will continue.
Like Ms Dempsey-Clifford, I cannot state with any certainty the reason the NDIS was not extended for a further year. The Department had already extended it from the end of 2021 to the end of 2022. It is mindful of the signal it would send if strategies are just continually extended rather than creating or giving focused attention to the development of successor instruments. There have been ongoing challenges in regard to the resources available to Departments to put towards this work and also other equality strategies of which the Department is steward came to an end in 2022. Given that disability is an equality ground, and given the importance of intersectionality, it makes a fair bit of sense for those strategies to have similar lifetimes. That might have been some of the thinking behind it.
The Deputy asked about the code of practice on accessible public buildings. Under our founding legislation the NDA can be instructed, or requested, by a Minister to develop a code of practice which provides a series of formalised guidelines for public bodies to follow. This code is to guide public bodies on how they can meet their obligations. In the disability Act, on having accessible buildings, these are buildings that are accessed and used by the public and under the stewardship of a public body. We hope the code will shortly be finalised and submitted to the Minister for approval. It sets out some practical suggestions as to how a public body might manage access to its building from the point of the approach through to circulation spaces.
It will address the needs of varying disabilities and hopefully make for a more accessible and inclusive experience for anyone accessing these buildings. Once it is approved by the Minister, the hope is we will be instructed to monitor compliance with the code. We are considering a series of measures that would allow us to do that. Throughout our monitoring work, we find the presentation of that data and information is very effective in concentrating minds and encouraging public bodies to do the best they can.
Dessie Ellis (Dublin North West, Sinn Fein)
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I know we are talking about public buildings. I assume the intention is that it will eventually have to apply to private buildings but that initially it would be just public buildings.
Dr. Aideen Hartney:
The legislation is specific that the code would apply to public buildings. It can offer some good practice suggestions in regard to private buildings. Through our centre for excellence and universal design, we have a large range of guidance that any building owner or manager can avail of to ensure their buildings are accessible.
Seán Canney (Galway East, Independent)
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I was listening to some of the presentations. I am double-jobbing as I am attending another committee meeting next door as well.
I have two particular questions having listened to some of the presentations. When it comes to getting to a stage where protocols will be implemented, are we making progress? Is there a plan that will give us timelines or is this something that we have to prepare, where we do not have legislation in place and we are going through all these processes that will meander through the next three to five years? Will we have the protocols in place in a timely fashion? We as a committee have been sitting for two and a half to three years. Our remit is to monitor what is going on. I am finding it hard to get a handle on what is being done, what progress is being made and when we might have a conclusion and the protocols in place to allow people who have disabilities to have the back up of legislation.
Dr. Aideen Hartney:
Progress has been made in some areas. For example, the enactment of the Assisted Decision-Making (Capacity) (Amendment) Act 2022 was a very significant move forward. That allows for supported decision making which was a major gap in Ireland’s compliance with the convention prior to that. Gaps remain in that regard. There have been some delays. Some were in relation to the pandemic response, for example, because some of those functions sat under the Department of Health. More recently, the transfer of functions from that Department to the Department of Children, Equality, Disability, Integration and Youth also delayed matters. We look forward to seeing progress resume in that regard. Reviews are also ongoing relating to the equality legislation and the Education of Persons with Special Educational Needs, EPSEN, Act. Those revisions and what comes of those will leave us in a better place. There are still areas which the State wishes to target. It would be for the Minister to decide at which point the work has progressed significantly enough to allow for comfort with ratification.
Seán Canney (Galway East, Independent)
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So we do not have timelines.
Seán Canney (Galway East, Independent)
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Looking to the legislation and the Acts that have to be tidied up and so on, where are they at? At what stage on the journey are we at to get them to where we can say they are in place?
Dr. Aideen Hartney:
Again, the legislation sits with various different Departments so they would be better placed to answer on progress on that. The latest we have heard on the mental health legislation is that it is reasonably well advanced whereas more remains to be done around the protection of liberty side. On the review of the Equality Act, all the submissions and consultation have been concluded. It remains for the Department to develop a report with some recommendations. It is a similar case with the EPSEN Act. I hope we will be hearing updates in the coming months but the timeline will sit with the Departments in question.
Seán Canney (Galway East, Independent)
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Dr. Hartney mentioned four things: mental health, liberties, equality and education. Who is driving all of this? Rather, it is not so much who is driving it but who is in charge. Who is taking this project and bringing it to a stage where all of these things are happening but where somebody is checking in to see if progress is being made and when we might see a finalisation of this as a plan?
Dr. Aideen Hartney:
Each of those would sit with a different Department or unit within a Department. The Department of Children, Equality, Disability, Integration and Youth is leading on the equality legislation review whereas the Department of Education is leading on the EPSEN side of things. The Department of Children, Equality, Disability, Integration and Youth took ownership of the assisted decision-making legislation. The mental health side is one of the anomalies coming from the transfer of functions between the Departments of Health and Children, Equality, Disability Integration and Youth because the mental health division stayed with the Department of Health. We have advised it is very important that the connection between the disability unit, now in the Department of Children, Equality, Disability, Integration and Youth, would remain with Department of Health colleagues. That would have a bearing on the ownership of that legislation.
Dr. Rosalyn Tamming:
The lack of a framework, because there is this gap in strategy, means there is no overall steering group where all those bits of information and progress would feed in and we would know how things are progressing.
Was the Deputy referring specifically to the optional protocol as well, as part of that? None of those pieces of legislation is required to ratify the optional protocol. That can be done at any stage. Originally, the reason Ireland took so long to ratify the convention itself was that the Government's approach is that it wants as much legislation in place in advance. The Assisted Decision Making Act was one of the things that delayed it but it ended up ratifying it before that passed through. In terms of the optional protocol, I am pretty sure I am right that-----
Seán Canney (Galway East, Independent)
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There is no hindrance.
Dr. Rosalyn Tamming:
There is no hindrance. The Department always said that after Ireland’s first round with the UN Committee on the Rights of People with Disability, where we have to go and present, the optional protocol would be ratified. We know now that we may not be called before that committee until 2027 or 2028 because it is so backlogged. I think the Department is open to looking at it. A new strategy will be the place that will fit. If there is a will it can be prioritised as an action.
Seán Canney (Galway East, Independent)
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Having to go to the UN to be examined is not a prerequisite to doing the optional protocol. It is a decision by the Government to do that.
Seán Canney (Galway East, Independent)
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But if that decision is to be left like that, it means that it could be 2027 before it gets to the UN and it might be after that when we have it.
Seán Canney (Galway East, Independent)
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So then it is back to saying someone has to make a decision right now and let us get this optional protocol in place right now rather than just meandering along the road for the next decade.
Dr. Aideen Hartney:
The Minister for Children, Equality, Disability, Integration and Youth has previously indicated that he is open to looking at an earlier timeframe for ratification and not waiting for 2027. The question is whether the priority is the development of the UNCRPD implementation strategy or whether it is the ratification of the protocol. The protocol is very important and it is of huge importance for people to have an international remedy or port of call but given the gaps we have been talking about and the lack of visible progress it would probably be more important to have an actual instrument in place for holding Departments accountable and getting them to articulate commitments for actions that would lead to day-to-day outcomes for disabled people.
Probably the optional protocol could then be an action under that banner rather than an overarching one. That is our suggestion.
Seán Canney (Galway East, Independent)
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I am concerned that we have many things going on but nothing happening. When somebody tells me there was a delay during Covid, that is fine. Covid is gone now. Then there was a delay because of the transfer from the Department of Health to the Department of Children, Equality, Disability, Integration and Youth. There is every kind of reason things are not happening. I think there is a frustration out there that things are not happening. As committee members, we have that as well. Things are just not happening and we are getting an awful lot of stuff but nothing really concrete. It is something we will take up again. I thank Dr. Hartney for that.
Pauline Tully (Cavan-Monaghan, Sinn Fein)
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To follow on, the NDIS was extended for one year and then when it was seen that a new strategy was not ready to go at the beginning of this year, it beggars belief why it was not extended for another year. Will the new strategy be in place by the end of this year? Ms Dempsey-Clifford said in her opening remarks that there is very slow progress on consultation and it is more about how the strategy should be implemented or put together rather than consulting on its content. Will we have a strategy at the end of this year or is there a date given for when we will have it? It is as if we are operating in a vacuum because there is no strategy. Both witnesses mentioned the different Departments and the DCCs are not meeting. Why are they not meeting? If the actions under the initial disability inclusion strategy that was due to end in 2021 have not all been met, why is work not ongoing to ensure that all of those actions are addressed, partially addressed or addressed in some way or another? It was said the monitoring meetings have been discontinued as well. It is as if everything as come to a standstill and there is a vacuum, so nothing is happening in that vacuum. Both witnesses made reference to the DCCs working and to the different Departments. I think Dr. Hartney said there are ten and they meet separately. Do the ten Departments all meet separately? Is there an overarching body? It was said a Minister and somebody from the Department will attend and they meet quarterly.
Pauline Tully (Cavan-Monaghan, Sinn Fein)
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No. I am referring to the different Departments and the DCCs.
Dr. Aideen Hartney:
Every Department is required to have a DCC and they would have met quarterly. The NDA would have attended those meetings along with members of the DSG. For the most part, they fell into abeyance when the strategy expired. There are a couple of Departments that have disability forums or groups and they have continued to meet. They are discussing more generally the disability dimension of the services the Department would offer. They are not necessarily tying that to actions that were committed under the NDIS, so there is a gap there. We welcome the fact that some Departments have dedicated groups to look at this area. It is a good step towards inclusion. However, they are not meeting and the steering group for the NDIS is not meeting. I am not an apologist for the Department at all in any way, but I think the officials perhaps felt that the groups and the personalities in the groups would be meeting very regularly anyway in order to develop the new UNCRPD implementation strategy as part of that process. There was a feeling that we would move to that track rather than continuing on the steering group meetings. We absolutely acknowledge that it leaves a gap.
With regard to a timeline, I hope the strategy will be ready by the end of this year and I think recent consultation events mean that more time will need to be taken. I think there is still an intention and a hope to have it as early as possible in 2024. We in the NDA feel there is a delicate balancing act. We no more than anyone else would very much like to see a strategy developed and published, and monitoring structures in place. However, if that strategy is seen as being developed in a tokenistic or tick-box way, it will not have the buy-in of anyone. It would not be starting from a good place and from a position of being as aligned with the convention as it could be. We feel that it is probably worth taking that little bit extra time to get it right from the start. The challenge is how to do that without losing further momentum.
Pauline Tully (Cavan-Monaghan, Sinn Fein)
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It was said some Departments are apparently working better than others. Can the witnesses give an example of Departments that are working well, or is that a no-go area?
Ms Renee Dempsey-Clifford:
First, what Dr. Hartney said is consistent with the view of the DSG. I am happy to endorse the point she made in that regard. Insofar as naming and shaming is concerned, with all due respect, this is not the place to do that, although the final review of the NDA’s independent assessment of implementation of the disability strategy makes for interesting and identifiable reading, if may be so diplomatic.
Pauline Tully (Cavan-Monaghan, Sinn Fein)
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If I may-----
Pauline Tully (Cavan-Monaghan, Sinn Fein)
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The NDA was requested by the Department to carry out an independent evaluation of the disability participation and consultation network, DPCN. When is that review due?
Dr. Aideen Hartney:
We hope that review is due shortly. We have a draft report and we are just clarifying a few of the recommendations within that with the Department. Then we hope we will be in a position to share it with the network itself, which contributed to the review. Thereafter, it will be cleared for publication. I hope it is by the end of this year.
Pauline Tully (Cavan-Monaghan, Sinn Fein)
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Do the witnesses feel that DPOs and disabled people are being consulted with regularly? We hear from different DPOs here that they feel the are not and sometimes it is a box-ticking exercise and the consultation is done to say “We have done it” but their recommendations are not taken on board by different organisations and Departments. Others feel that the wrong bodies are being consulted with in that, according to the UNCRPD, it should be DPOs or disabled people themselves and not service providers, for example. Will that all be addressed as part of the review? Is there more to be done there? What is the best way to identify them? There are many different DPOs – some quite small and some large. Some have suggested a register but the Department does not think the register is a good idea. What do the witnesses think of that?
Dr. Aideen Hartney:
Some of that ground will be covered in the review. We would have said before in this committee that the DPO landscape is evolving in Ireland and it is at a younger stage than it is in some other states.
On providing a mechanism for identifying DPOs and being able to direct Departments towards them, that is a practical suggestion. We have some guidance ourselves in our Participation Matters guidelines as to how public bodies could effectively consult and engage.
It is worth stating that while the convention gives clear space to and recognition of DPOs in consultation and monitoring, it does not preclude other stakeholders being involved. We feel that all parties have valuable perspectives to bring. Our guidance is that DPOs should be consulted with as a priority and, where feasible and practical, their input should be taken on board and addressed. If it is not feasible, they should be given reasons and an explanation as to why not. Definitely, family members, service providers and individuals who do not wish to be part of the DPO all have valuable perspectives.
It is about creating space and mechanisms for their voices to be heard.
Dr. Rosalyn Tamming:
The fact that those spaces and mechanisms are not fully worked out is one of the reasons the strategy is not moving along as fast as it might. It is not that there is disagreement but how the consultation process is going to work has not been fully worked out. That has to be worked out fully first before we can move into what one could consider a normal consultation process, getting into the nitty-gritty on actions and so on. It is a very important point and we hope the disability participation and consultation network, DPCN, will review this and help the Department to make some decisions around that. The DSG exists now but was not part of the DPCN review. Everything has to fit together without any conflicts arising, so it is an area still to be explored.
Ms Renee Dempsey-Clifford:
If I may add, as both Dr. Hartney and Dr. Tamming have said, the shape of how the consultation goes is taking time but it might actually be valuable time, notwithstanding that we do not have an active strategy going. Getting the model of the consultation process sufficiently acceptable is important. Personally, I do not see everybody being totally pleased with any outcome but in the broad brush, meeting the objectives of the convention without exclusionary activity should be sufficient.
I mentioned earlier that the disability community accounts for 21% of the population now, and will probably be larger when the next census is published. That in itself is very large but it also means we are dealing with a very large group of people whose diverse views represent the natural diversity of individuals and communities. I am not afraid to criticise people but it is not an easy thing. I have been observing many of the meetings that have been going on and they go down into the dark hole of questions like "Are we the right people in the right place talking about the right thing right now?" It is one of those processes that is embryonic, as Dr. Hartney has said. We have not really matured to a great extent but on the positive side, every one of these meetings builds capacity within the DPOs. For a small group of people who have not previously been advocates or activists, just engaging in a meeting and seeing standard operating procedures, how one constructs one's arguments, how one gets allies for one's arguments and so on, in its own way is a beneficial outcome because capacity is being built.
In terms of reasonable accommodation, if there are people who need more time, perhaps because of a particular condition, to articulate a position, then instead of a speaker only talking for two minutes, it might be necessary to wait five minutes to hear their valuable contribution. They may just have slower processing or a slower methodology and that could include things like intellectual disability. If the broad church of what the convention is aiming for is as inclusive as it says, and if Ireland is trying to meet that, then there are readjustments, not only for the community of disabled people and their various groupings but also for groups like ourselves and this committee, to come forward with that accommodation and space and to allow people truly to be heard. It is a journey and we are in the very early stages. Those are my personal opinions.
Frank Feighan (Sligo-Leitrim, Fine Gael)
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I apologise for being late but I spent a little more time trying to get into Leinster House this evening than I would have liked. However, I was following the meeting on my iPhone. It is great to have modern technology.
I am delighted to see the DSG represented here and I thank it for the work it is doing. It is great to see that there are people with lived experience of disability in the group and great that it facilitates those discussions. That is very helpful for Departments, politicians and everyone else. It is good to have a united voice so I congratulate the group on that.
I wish to raise a number of issues with our guests. The first is the development of the new strategy. It is not a priority for the Department and I know others have discussed this already. What more can we do? I know that our guests have gone through this already but it is probably not getting the attention it deserves. I know that when I was in the Department people who were working on areas such as the national drugs task forces were moved to deal with Covid. While that was understandable, there is no such excuse for it from here on in. I saw a lot of things in the Department being put on the back burner because of Covid, and maybe that is the issue.
Another issue is that of local authorities and local area co-ordination. How can the local authorities work to better accommodate people with disabilities? Sometimes we discuss these things at a national level but, in reality, they are implemented at a local level. Are there good practice examples in the UK, Europe or elsewhere? Another issue is that of decongregation and progress on same in Ireland. Some have said that it is slow and needs more impetus. What are the real barriers to real progress? What can the HSE and the Department of Children, Equality, Disability, Integration and Youth do together to achieve what we want, which is independent living?
Again, I thank the witnesses for the great work they do. I am delighted they are here today.
Ms Renee Dempsey-Clifford:
I will be brief because a lot of those questions are outside my remit. I am not being unhelpful when I say that but on some, there is no offering I can make. On the question of the development of the new strategy, we have said that it is too slow. We have identified various reasons for this, including the fact that we are taking steps backwards rather than forwards in trying to formulate how that strategy could be developed as part of a consultation process. The role and function of developing the strategy lies with the lead Department but I believe that Department is probably not as well resourced to move forward as it might be. Deputy Feighan has touched on some of the reasons for resource changes, including the other challenges in that same Department. While we respect that, we would argue that we should not be last in the queue any more. That would be the DSG perspective on the development of the next strategy.
A further thing that happens, and it is an inevitability with public services, is that there might be somebody in charge of a particular unit who is very skilled, knowledgeable and energetic and then that person is moved on or changed. In many ways, one takes two steps forward and one step back in those circumstances. It is not a question of bad will, it is just the reality that personnel changes can slow down all progress. Resources, among other things, are one of the pivotal pieces contributing to the slow development of the next strategy.
Dr. Aideen Hartney:
I thank the Deputy for his questions. I echo Ms Dempsey-Clifford's point on resources within the Department. Even though it has significant numbers of personnel now, following the transfer of functions from the Department of Health, many of those people are looking after specialist disability services whereas what we are talking about in the development of the strategy is a more policy-facing role. More resources and focus there would be helpful.
On the local authorities question, one of the barriers is the fact that there are 31 local authorities and, therefore, 31 approaches and often 31 ways of acting. We feel there should be some improved co-ordination between those bodies and upwards through the Local Government Management Agency, LGMA, and on to the Department of Housing, Local Government and Heritage. One of the gaps we identified in our assessments of the national disability inclusion strategy was that it was very difficult to get updates on progress or on actions that local authorities would be charged with delivering. Building in some of those mechanisms at the start of a new strategy would be very helpful. We know that in some local authority areas there are public participation networks whose membership would include disabled people and other marginalised communities within that area. They seem to work very effectively at local level so there is probably learning that could be captured there and brought to bear on the new strategy.
I will start on the decongregation question and then bring in Dr. Tamming. It has been slow, and slower than hoped, for a number of years. There are numerous barriers, one of which is access to housing in a suitable place within a community, where there is access to the community and to transport links. Such housing must be capable of being adapted to meet the needs of people, many of whom have very high support needs. That is a real issue. Indeed, housing is an issue for the entire country.
It also takes time to effect decongregation in a properly person-centred way, in which people are given the time and space to consider new living arrangements, with whom they might wish to live and what configuration that would take. This is a challenge. We also hear anecdotally about some outdated attitudes from family members or staff who feel moving to the community is not the right move for their loved one and this can slow the process considerably.
Dr. Rosalyn Tamming:
The HSE figures are that approximately 1,600 people are still in congregated settings. HIQA has higher figures. Progress has been quite slow. Detailed figures have not been done in a while. The HSE is planning to do another comprehensive census of who is still living in congregated settings. This will help with the planning.
Covid had a big impact as it was not as prioritised. There is also the housing issue. We have done several pieces of research in this area. One study looked at the lives of people before and after leaving congregated settings and living in the community. It found that quality of life is much better when living in the community. We also did a study looking at the staff and seeing how they adapted to moving out into the community. There is quite a difference. It requires almost a whole different set of skills and competencies and ways of working. Some adapted very well and others struggled a little. Managers found it a very busy resource-intensive time. Resourcing is an issue that will have to be considered. In the next strategy, I would love to see ambitious commitments to have everybody decongregated within five years and see the resources put in place to do this.
Eileen Flynn (Independent)
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Before I begin I want to say my comments are not personal to anybody at the table. I want people to know this. I am absolutely blue in the face from strategies that have not worked for many communities in this country. In the next 30 to 40 years, we will look back on how we treated people and children with disabilities and how we failed them. I am sure to God the Government will owe these people and their families an apology. I cannot say I have never seen the likes of it because I was reared with the inequalities that people with disabilities and the Traveller community face on a daily basis. One of the root problems is all of these strategies have "action one" and "action two". They state they will be enacted within five years but five years later, there is no sign of them being enacted.
I will speak for myself and not on behalf of the committee but we are having conversations about the Disability Act being outdated. We need to look first at reviewing the Act and a way forward for people with disabilities. There is the issue of appropriate accommodation and housing for people who have disabilities. It is nowhere in sight. Next February, I will have been a member of the committee for two years. We have made recommendations, and people from the Department have made recommendations, but there has not been one implementation. This is what we are lacking as country. We have the answers in every strategy. I know with all my heart that in the next strategy people will mean well about including people with disabilities. I know it and I see it. I have been involved in activism for more than 16 years. What has changed for people with disabilities in this country? Little or nothing has changed except it is more acceptable to have a person with a disability at home and we no longer call people names. It happens to a certain extent but we no longer put people away for shame because they have disability. This is one positive thing.
I do not want to go off the point but I am so frustrated. That is not the fault of anybody around the table. We are looking for another strategy but we know that nobody will be held accountable for when its recommendations will not be implemented. I worked with the National Traveller Women's Forum on the Traveller girl strategy. The National Traveller Women's Forum is blue the face, as are a lot of organisations, looking for the implementation of strategies but it does not happen.
If we were to have a national equality and inclusion strategy for people with disabilities, what would it look like? How would it differ from the previous one? What actions would be in it? Where would the implementation be? I want to stress the issue of implementation. We have spoken about local authorities. The starting point for me would be to make all parks accessible for all children with disabilities. I have said this previously at the committee. This could be a starting point. We could go on about housing and appropriate lighting and they should all be in place as well, but if we really mean action why is it not been done?
Tomorrow I will attend a meeting of the Joint Committee on Key Issues Affecting the Traveller Community. It is different from this committee but, again, nobody is held accountable for not living up to recommendations. We could have a recommendation to have every park in the country accessible for disabled children. Five years later, it will not have been done and we will go back to the drawing board. The answers are there. The NGOs have the answers. People with disabilities themselves have the answers. For me, it is about implementation and what the next strategy will look like. How can we make sure it is acted on? I thank the witnesses for coming before the committee. I have been around strategies for years, such as the National Traveller and Roma Inclusion Strategy 2017-2021 and national disability strategies. Some good work has come out of them and nobody is saying otherwise. There are good workers in the Departments. We genuinely need more action. Covid was a big excuse for people not getting services. I am not an anti-vaxxer and Covid was very real. I got my vaccinations and all that jazz. However, it was used as an excuse to keep kicking the can down the road. How do we put our money where our mouth is?
Ms Renee Dempsey-Clifford:
I thank the Senator for a very impassioned and accurate statement on a personal level. I often wonder, and I am speaking personally, whether there is family in Ireland that does not have somebody with some form of disability. I do understand the point the Senator is making. Certainly from the point of view of the Disability Stakeholder Group in so far as we addressed any of the points she has made, and we have not I hasten to tell her, we do believe that accountability is important. Our view is that for the future any strategy, and I apologise for the distaste of the word, implemented at departmental level should mean an annual obligation on the Department to publish its progress. A big bugbear in the Disability Stakeholder Group when it looks at reports of progress to see words such as "ongoing".
Ms Renee Dempsey-Clifford:
If I had my way and if I ever ruled the world, that word would be banned. All I can say is that the Senator's sentiments are very consistent with those that the Disability Stakeholder Group articulates to me when we have our meetings.
Dr. Aideen Hartney:
I thank the Senator for her comments. It is not the first time we have heard that Ireland is considered policy or strategy rich and implementation poor. It is interesting to hear that she is having similar experiences with other strategies. In terms of how to ensure the next strategy can look different or have a different outcome, a couple of suggestions we have fed into the pot is that there should be prioritisation. There should be a focus on some high-level key goals or key themes rather than list of granular actions. As Ms Dempsey-Clifford and the Disability Stakeholder Group have said, lead parties should be assigned responsibility on how to account for a strategy. It would be helpful if all Departments could take seriously the way in which a strategy is translated down into local work plans. They can take a high level goal that is articulated in a strategy and ask what it means for their area of work. They can then state what they will do over the coming two to three years and then report on this.
The Senator mentioned the Disability Act. It probably would be timely to review that Act, given that it is almost 20 years old. Within the Act, there is provision for sectoral plans whereby Departments or sectors are asked to set out an action plan as to how their services will be delivered to disabled people, both their mainstream services and then what they will do to put in some tailored, specialist or bespoke services, and how they will resource that. Then the Act provides for regular reporting to the Government, to a committee such as this, on the implementation of those plans. That would be very useful to look at as the next strategy is developed because it provides us with a steady blueprint or road map for action.
Eileen Flynn (Independent)
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I do a lot of work with Independent Living Movement Ireland. It is all about choice. Just because someone is disabled does not mean he or she cannot make choices. We have seen that a lot lately. People are looking for care assistants, people to support - I do not like the word "help" - them to do things for themselves. We say people have the choice to live independently, yet there are no supports for a person at home to be able to live his or her life to its full potential. It is such a failure. Anything that makes life easier or better for people with disabilities, obviously, we would welcome as a committee. A strategy would be important if we could be guaranteed that the recommendations and the actions would be implemented. Not all of the Disability Act is outdated but parts of it are.
Dr. Rosalyn Tamming:
Having targets around the indicators is really important. If we say we are going to increase employment for people with disabilities, what does that look like? What is the number? What have people agreed to? In the previous strategy there were no targets, so we could not really say whether they had been achieved because we did not know what we were trying to do. That is a change that will be really important in this strategy.
Ms Renee Dempsey-Clifford:
Tying into a lot of that, one of the things that exercised the DSG regularly in looking at the strategy was that a number of actions are shared by a number of Departments, cross-cutting, and there was no lead Department to do that. In the absence of somebody having to answer for five other Departments or local authorities or whatever combination it might be, there was total inaction because if nobody is answerable, nobody will rush to answer.
The DSG has taken another very strong position. When we met the Minister of State with responsibility for disability and report to her, in the absence of the people who hold the purse strings at any of the meetings, a lot of it was talk. There is the three-dimensional understanding that would be needed for people. If a Department says, "We would love to do it but we cannot get it from the Department of Finance or the Department of Public Expenditure, National Development Plan Delivery and Reform", the very strong view of the DSG is that the Department of Public Expenditure, National Development Plan Delivery and Reform and-or the Department of Finance should be at least at the quarterly meetings with the Minister to hear what the community and the experts who assess how things are being done and the individuals are saying. At the end of the day, money is the thing that makes it all work or not.
Tom Clonan (Independent)
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I thank the witnesses for coming in. I apologise; as the Minister, Deputy O'Gorman, is before another committee, I will have to leave after their responses to attend it.
I was on the DSG and benefited from Ms Dempsey-Clifford's stewardship and her skills as a chair, so I appreciate that very much.
As for the NDA's reports, I have a number of young adults and teenagers. My youngest fella has gone into transition year, and if he got a report like either of those reports at end of term, I would be annoyed with him, to say the least. He would get a few sharp words from me about a complete lack of application and lack of engagement. They are quite poor reports. When the constraints under which the NDA operates and the diplomacy with which it has to engage is considered, it is striking that both the reports corroborate each other. A number of terms are used, such as a lack of willingness and the sense that people are dragging their heels, taking steps backward.
We are in absolute crisis. The Government has a PR campaign at the moment called "Disability rights are human rights". I came back to Dublin at the end of August and saw it on a bus shelter and I had to stop and check myself. This is the Government that sent an instruction from Cabinet to kill my disability Bill just before the summer recess. This is a Government that says one thing but does another. "Disability rights are human rights." Luckily, because of the generosity of my colleagues in the Seanad and the Government parties, we actually managed to get that legislation to its next Stage, and I will return to that.
We have a crisis with children who have experienced chronic delays in accessing scoliosis surgery in Temple Street Hospital. Their operations are delayed to such an extent that they go into crisis and then the surgery becomes very complex and has life-limiting and life-altering outcomes. We have learned that it has led to the death of one child. That is Ireland in 2023. My own son had such an experience in Temple Street. If I did that to a cat or a dog, or cattle, an inspector from the Dublin Society for Prevention of Cruelty to Animals, DSPCA, would come to my premises and take that animal away from me. We are doing that to children with disabilities in this country, and it is not an event. This is a slow-moving, foreseeable outcome of inaction. It is not for lack of resources. We have plenty of money. It is for a lack of will. That is something to which the NDA alluded in its reports.
I think of people like Geraldine Lavelle, who suffered a spinal cord injury, a beautiful young 29-year-old woman in Sligo who cannot live independently. She is in a nursing home, even though she has a fully adapted and accessible home near her parents in Sligo. She cannot live there because the HSE will not administer - I will not say "cannot" - a care package for her. I think of people like Daniel Airey in Dún Laoghaire-Rathdown, a beautiful young man who wants to live an independent life. He cannot because the HSE will not administer - not cannot - a care package for him. We have children lactating due to inappropriate prescription of medicines because they had doctors who did not have higher specialist training.
The NDA's reports are negative. My assessment of the situation in Ireland with regard to disabilities and anybody who is vulnerable is that it is an appalling vista, and in our lived experience it is deteriorating. Mr. Paul Reid, before this committee as CEO of the HSE last year, admitted that the progressing disability services in the community programme was a complete failure. There is no accountability. We do not know what clinical sign-off there was on it. I can tell the committee, there was none. There was no impact study done, there was no risk assessment, and thousands of children are suffering. The HSE cannot even do the assessments, never mind provide the supports and the therapies.
With the same intellectual honesty we had for the financial crash, where we handed over affairs to our European partners, I think we are at that point when it comes to disabilities. What would be routinely possible throughout the European Union and even in the United States, in Trump's America, with the Americans with Disabilities Act, where they can provide care packages, we cannot.
It is not that we cannot; it is just that they will not.
In terms of accountability, Deputy Ellis asked whether full ratification of the protocol of the UNCRPD, which is contained within the programme of Government, would assist us in persuading the agencies of this State, so the Department of Health, the HSE or whomever, to do their job. CHO 6 in Dún Laoghaire-Rathdown has one of the largest populations in the State. I was in the office of the Minister of State at the Department of Health, Deputy Rabbitte, and learned that that CHO only has around 20 care packages in operation. What does that say? Such a situation is beyond comprehension. It is a brutal situation. We have thousands of young people inappropriately housed in nursing homes for want of proper accommodation and care packages so we have to shout from the rooftops.
I know that Dr. Tamming is constrained to a certain extent in how vocal she can be but Senator Flynn was right. This is the mother and baby homes scandal of our time but this time we know about it. Therapy and treatment delayed for children within the therapeutic window, and within their little chance at life, is a life denied. We are doing that to many thousands of families. I would argue that we need to ratify the protocol fully. When my colleagues on this committee go to their parliamentary party meetings, I ask them to please impress upon their leadership to do this and take action. I ask that because the likely life cycle of this Government means that must happen soon, either in this winter term or spring term or else it is not going to happen, and this is the only thing that will hold people's feet to the fire. For what it is worth, I will continue to push my Disability (Miscellaneous Provisions) Bill 2023 and I have other legislation to bring forward. The only way to get an answer to this issue is to compel people to do it.
When HIQA appeared before this committee, there was talk about its time to move on policy and decongregating from these settings. I think they stated that 5,000 people had been decongregated since 2015. I asked the HIQA representatives where those people went and was told the authority did not monitor that. I know from the volume of correspondence that I receive every day that thousands of these people went home to elderly parents and go into crisis. The stock response from the HSE is that it will not intervene unless one of the elderly parents has died and the other is terminally ill or in crisis. Hundreds of decongregated people are homeless because we know that a disproportionately high number of disabled citizens are homeless.
Dr. Tamming has said that the National Disability Authority carried out a study on how people fared. HIQA told me at this committee that it does not know where these people have gone. Has Dr. Tamming an idea as to where the proportion of people who have been decongregated have gone? I have been told that it will be 18 or 19 years before my son will succeed in getting a housing unit, so I will be over 80 years of age if I am still alive. Given the housing and homeless crises, does Dr. Tamming have a sense of where these 1,600 people in congregated settings might realistically go?
Dr. Rosalyn Tamming:
Up to 2019, the HSE published annually where people went. Let us say 200 people were deemed to have been decongregated or left. A portion of them died, a very small portion went to nursing homes, perhaps for terminal-type care and the majority went to homes in the community of four people or fewer. I would very much dispute the claim that people were sent back home to their families. That has not, in our experience, been something that has occurred; not for people who lived long-term in a residential setting. I have never heard that and I was a member of the HSE's time to move on working group. The group stopped meeting for a while but is starting back up again and will conduct a census.
Tom Clonan (Independent)
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I have received hundreds of emails from families in crisis for whom precisely that is what has happened. For example, a couple in their 80s will have had their son or a daughter who are in their 50s returned to them. I have been told that sometimes, people are transported in a taxi or a minibus and the parents are told, "Here you are." This is not fake news. It is not an artificial intelligence generated programme to confuse me. These are real people. Every day I meet people here in Leinster House and they tell me their stories. I am getting to the point where I must take my leave and sit somewhere to cope with hearing all this. The amount of unmet need is shocking in Ireland. I am travelling and fact finding. I have been to other jurisdictions and know that Ireland is a complete outlier. I know it is not Dr. Tamming's job to defend the State. Does she really believe that there are housing units and care packages available for the 1,600 people, when the number of packages in the CHO 6 area in Dún Laoghaire-Rathdown is in double figures?
Dr. Rosalyn Tamming:
These people would not be classified under care packages. These people would still be under the remit of disability residential services, so it would not be a care package. It would be that staff had moved from the congregated setting into the community with the people they care for.
Tom Clonan (Independent)
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Why is it the case that people like Daniel Airey, Geraldine Lavelle and my son cannot get that support?
Tom Clonan (Independent)
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What about the tens of thousands of people who are coming through?
Tom Clonan (Independent)
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Let us not deflect from the core issue. What about the tens of thousands people who are coming through? I refer to people like my nephew, Donagh, who has Down's syndrome and lives in Dundrum. There is nothing for him. There is nothing for my son. There is nothing for the hundreds of people who have contacted me and because of the statistical analysis, there are many thousands of people. Is Dr. Tamming not alarmed? It is a slow moving human catastrophe. When our children and historians discuss this in ten, 15 or 20 years' time they will ask people like me what did they about it, when did they know about it and what did they do.
I have raised this issue and know that the authority it not responsible for it but Dr. Tamming knows that the HSE is not doing what it says on the tin and neither are the other agencies. We have a completely and utterly dysfunctional system. There should be no section 38 and 39 organisations. There should be a level playing field. The State should live up to its commitments under the Constitution and European law to ensure that all citizens, and all children, have the right to participate fully in this Republic. It is so wrong to have people with scoliosis left for seven or ten years, which is what happened to my son. In fact, he had reached the point where he was so twisted over that his head almost touched his arm. It is so wrong to do that to a child. Yet we have another stay, another report and another inquiry but no haste and nobody doing their utmost to solve the situation.
My take on all of this issue, having been a member of this committee and having listened to all the witnesses who have come in here, there seems to be a disconnect between the institutional, bureaucratic and organisational processes and the reality on the ground. The reality on the ground is brutal. When George Bush began to dismantle whatever public health system they have in the United States, he was asked what was his health policy and he said, "don't get sick."
I am telling Irish citizens that if they have a disability, if they get sick or if they are elderly in the emergency department, you are in big trouble. The World Health Organization tells us that every single citizen will experience a period of disability in their life, probably as we get older. The average is eight to ten years. It is in all of our interests to solve this. It requires intellectual honesty at all levels. I am saying it like it is, through lived experience. I cannot understand why that imperative, dynamic and that immediacy is not there. I do not hear it from the organisations, institutions and service providers that come in here. I just do not hear it. I hear the language, the calm calculus of reason and the attempt to reconcile chaos into some sort of narrative that can be controlled. However, the reality on the ground is that if you have a disability, there is nothing there for you. There are no therapies, no physio and no speech therapy. There is nothing. Within the therapeutic window there are thousands of children who are not being treated, not being supported and their lives are being irreversibly damaged. It is having life limiting and life altering consequences for them. There is also the impact on families. Can you imagine the impact it has on a parent to watch a child deteriorate? For the past ten years, every time I bring my son to a therapist, all they can do is measure his deterioration. We are a republic in the European Union. This does not happen in other jurisdictions in the European Union. They have ambition. They have a desire to actually deal with this. Is it because there is a belief in Ireland that this is the responsibility of the family, or that it is a burden that should be borne by women? I do not know but we have to do our utmost to deal with this, whether that is by supporting legislation that would oblige the service providers and the HSE to do what is needed. The Minister of State, Deputy Rabbitte, walked out of a meeting the other night because of her sheer frustration at the HSE refusing to comply. I have been in meetings with the Minister of State, and I know she will not mind me saying it, where I have seen disability service managers tell her, "I am not doing that, Minister." She has closed the call and looked at me and asked if she was challenged.
At the same time, the Cabinet gives an instruction to kill legislation that would legally oblige them to do their job. I apologise to the Chair, as I have gone on too long. I know I am exercised, because I get this every day. I do not hear from Trinity graduates. I do not hear from them at all. I hear from hundreds, at this stage thousands of people in absolute crisis, because I have been here for 16 or 17 months. Every day I hear from them. What can you say?
Dr. Aideen Hartney:
There is little we can say by way of response to that. The Senator has clear examples of where the gaps in the system lie. Our part of the jigsaw is in providing the evidence and research, such as the Senator speaks of, to help the State plan for these situations. Some of the work we have done is about forecasting future need and we hope that a disability capacity action plan might be produced shortly to help the State in terms of planning to avoid some of those crisis situations and to address those gaps the Senator has talked about. On accountability, one thing we believe would be important for a new strategy is for those at the table on the departmental side to be senior decision makers in order that when they hear this kind of feedback from people with lived experience, they will be empowered to make decisions or collaborate with colleagues to find solutions, rather than simply reporting back at base and up the line.
I echo the point made by Ms Dempsey-Clifford. The money side of it is hugely important to adequately resource any interventions the State agrees on, rather than this requirement that it be done on a cost neutral basis or within existing budgets. We know that does not work. That part of the equation needs to be strong.
Ms Renee Dempsey-Clifford:
I thank the Senator for his kind opening remarks. He is familiar with the DSG. I will quote back what I said earlier, because I think it touches exactly on what he is speaking of. The delivery of disability policy must have "human rights at its core, and for it to be realised, it must have political commitment and leadership at the highest level that are cascaded down to all members of the public service". The experience of the DSG is that the disability dossier, if I may use that word, can be a low priority in Departments that do not see it as theirs. The health model is much more in the minds and hearts of those who are supposed to be delivering this policy, than the social model. I am drawing on DSG statements, and it is not personal.
Tom Clonan (Independent)
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I appreciate that, and I appreciate that is a frank response. It aligns with my experience that it is of low priority. Apart from giving out about this, there is a responsibility on people like me to try to be a part of the dynamic that persuades those in positions of power to actually have the political will to drive this thing forward. I will try to finish with something positive. When I started on this journey with my son, purely by accident of circumstances, we were met with hostility ten years ago at the first contacts we had with officials. In the Administration of 2016, Finian McGrath was Minister of State with responsibility for disability issues, which was a novel appointment, it went from hostility to listening to you. I think with the Minister of State, Deputy Rabbitte, there is evidence somebody is there who is genuinely trying to get to grips with the problems. I think from the attitudinal, philosophical or cultural perspective, we are probably moving in the right direction. However, I feel there is a tsunami of crisis in the community. Notwithstanding the research we know there are thousands of people who are not at risk but who actually are in that space. As the clock ticks and the months go by and we go from Hallowe'en into Christmas, there are children aged between four and eight who are lost because they did not get that intervention. We should be ashamed of ourselves. We are failing them.
Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail)
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I agree with the Senator; I see it myself. I work with families every day and a few months ago, I met some of the parents from the Carlow branch of Down Syndrome Ireland and told them about this meeting. Some of the parents told me that nothing was being done and they were getting tormented and disillusioned. Young children there need speech and language therapy. They need the therapies they need. I think parents are now really feeling it for their children and for children who need the services that are there. I can only speak highly of the Minister of State, Deputy Rabbitte. I constantly work with her on issues within my own area of Carlow-Kilkenny. I have a recent case involving the nicest family you ever came across. They have a son who is in his late 30s or early 40s. The parents kept the son at home all of their lives. They were delighted to have him. He used to go into a great centre for a few hours every day. We have lots of good centres in Carlow, so we are very lucky. They got to the stage where they are not able to manage him any more. I suppose it is because they have got older. I had the Minister of State's heart broken for months to try to sort a solution, and to get him into one of these small residential homes.
We did that, but he is still not in it. We have funding from the HSE, the Minister committed to it, but the reason he is not in that home is that it has no staff. Now, I have been-----
Tom Clonan (Independent)
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On that point, there is a service provision model. We have pointed it out to the HSE, as has the Minister, but it is refusing to implement it.
Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail)
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Yes.
Tom Clonan (Independent)
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This model could solve that problem the Deputy spoke of and hundreds of others as well that I am aware of. I am sorry for cutting across Deputy Murnane O'Connor, but there are solutions.
Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail)
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No, the Senator is fine. The issue is that while the funding is there, a place is available for this young man to go into a residential home, and the parents will take him when they can, I am being told there is no staffing available. There should not be section 38 and 39 organisations. For me, this is the biggest issue and one of the biggest challenges we are facing across the sector. We spoke about the fact that more than 21% of people have a disability yet the system is failing them. I have been on this committee and coming to these meetings. I am honoured to be a member, but I can see the challenges that are there for the families. I work with families of children with disabilities every day and they are burnt out and worn out. They feel the system has let them down. I feel what was said is right and we need to do more. I firmly believe housing is the biggest issue. I refer as well to the action plan for health and the roadmap for children in the context of disability services.
I have two or three questions. Will the witnesses from the DSG discuss if all disability groups are represented in their organisation? Will the representatives of the NDA also discuss the delay with regard to the personalised budget project and the impact on independent living? I have been asked about this area several times. Will the representatives also discuss how the DPOs are being consulted on policies to implement the convention and how this can be improved? We all understand the challenges. I am sure the witnesses see them themselves and that they talk to all the different agencies and the families. I feel now, however, that we are getting to a crisis situation, where families are at their wits' end. This impacts families because once a child is affected, the whole family is affected. Could the witnesses please come back to me with those answers?
I again thank all the witnesses for coming in. I know they are doing their best and that they see these problems as well. We must all keep fighting and highlighting the cases and ensure we do more. Again, I state that I firmly believe the Minister of State with responsibility in this area, Deputy Anne Rabbitte, is trying her best to make the changes she can. I say this because every time we go to her with cases, she does her best. Something else could happen then, which results in her being told something cannot happen and she cannot do something. I again thank the witnesses.
Michael Moynihan (Cork North West, Fianna Fail)
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I thank Deputy Murnane O'Connor. I call Ms Dempsey-Clifford.
Ms Renee Dempsey-Clifford:
I will address some of the questions Deputy Murnane O'Connor has posed. The representatives from the NDA will probably have views on some of the other queries.
The DSG is appointed by way of an open invitation for expressions of interest. The invitation that went out about two years ago for the current DSG elicited almost 80 responses from the community of disabled people. The request for expressions of interest did specifically refer to individuals, DPOs and stakeholders in the broadest sense, but it did identify DPOs as well. From those approximately 80 people, a series of criteria was used to make a selection. I did not and do not get involved in the selection process at all. My independence as chair is enshrined in keeping away from the day-to-day matters of that endeavour. The process by which the 23 people who are on the DSG now were selected was based on a series of criteria, including their experience, their backgrounds and whether they showed best-in-class qualifications, if I may use that term.
Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail)
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Right, yes.
Ms Renee Dempsey-Clifford:
I do not want in any way to impugn those who were not selected by saying that, but it can be imagined that the selection committee sought to get those people it saw as the most reflective and best qualified group to speak on behalf of the disabled community in a monitoring context. The group itself, once formed, is inclusive of DPOs and individuals with personal disabilities who speak. These individuals are self-advocates and are not members of DPOs. In fact, very often, they have said they do not wish to be a member of a DPO, while also not wishing to be excluded because they are not in a DPO from matters relating to their lives and policy. I refer to aging parents of children with severe disabilities who are concerned about this. The various strands of the disabled community are represented, broadly speaking. I am quite sure someone could critique this and say some people are missing and others could be included, but what we have is a group that is, in my view, broadly representative of the disabled community as a whole. As I said, though, I am sure there could be critics in this regard.
On the DPOs in the context of the Deputy's other question, regarding the consultation process in this regard, and I am not being glib when I say this, the burden of the obligations of the convention falls on the State to deliver and the State must find the appropriate formula to meet Article 4.3 and other articles of course relating to the engagement of persons with disabilities in the development of policy-----
Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail)
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Right.
Ms Renee Dempsey-Clifford:
-----and in the consultation and highly visible and apparent engagement. That formula has not yet been satisfactorily found, as far as I have observed. It is a work in progress. Most people are of good will and good heart in this endeavour but, like everything else, when we have as large a community as there is in the area of disability, the difficulty lies in finding the formula that meets a consensus, such that everyone accepts it is more or less the right shape and the right way in which DPOs, individuals and other stakeholders are all represented. I say this because it is not possible to say that a parent of a child should have less of a voice than a DPO, in some ways, but DPOs are given prioritisation because they are a conglomerate voice in the context of the convention. My observed consideration and view, therefore, at this point is that this is a work in progress. It will, potentially, be some time before this formula is found that will be broadly acceptable, allowing for the fact that there will always be individuals who will not agree. I hope that is helpful to the Deputy.
Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail)
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Yes. I thank Ms Dempsey-Clifford.
Dr. Aideen Hartney:
The Deputy asked about personalised budgets. In the first instance, these would be an enabler of independent living for many people. These would not be for everybody because the exercise of choice and control and the use of a personalised budget come with associated management and administrative tasks that some people would choose to avoid and not take on. This project is very delayed, though. The NDA is represented on the oversight group for the demonstration project, and we have also been asked to evaluate the demonstration projects. To date, we have not been able to get started on that task because the process is so delayed.
Some of the reasons for this include how the project is resourced within the HSE. It simply does not have enough people to manage this process with all those who have expressed an interest in being part of the pilot. There are also other issues. One of them is what I alluded to earlier in respect of the theory that things should be done on a cost-neutral basis. No additional budget was made available for this pilot project and it is very challenging to test approaches to using a personalised budget if people are constrained on the amount of budgeting available to them. This is the issue. People must be in receipt of HSE-funded supports and services to participate in the pilot. Depending on when they came into the HSE system, some people may have a higher or lower budget. When they start the journey of assessing what they would get into their own hands for their own management, it is a sobering realisation for many of them that they would not be able to live independently on a budget that could be unbundled.
While I know Covid-19 and the cyberattack are in the past, those events did have significant impacts on the timeline for this pilot project. Nevertheless, there is a lot of learning out there. As an organisation, therefore, we certainly would be keen to be able to start the evaluation and to start gathering the fruits of this learning and to document it so it can inform the senior decision-makers as to what issues need to be resolved and where they need to be resolved so the next steps could be agreed. We certainly feel the pilot has been going on and on, with not a lot to show for it to date. We would, therefore, be very keen to document this learning so we could move to whatever the next phase might look like.
Jennifer Murnane O'Connor (Carlow-Kilkenny, Fianna Fail)
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That is important. I thank Dr. Hartney.
Michael Moynihan (Cork North West, Fianna Fail)
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I thank the witnesses for the evidence, the information and the debate. I agree that in the time to come the State and An Taoiseach will be apologising for the disability services. I say this because we at this committee encounter the unmet need in this regard. I see some of the services and I think the section 38 and 39 organisations were better able to access funding in this regard.
We spoke about residential units and the witnesses mentioned the housing units with fewer than four participants. Many of those were applying under the Department of the Environment, Climate and Communications capital assistance, CAS, programme and building their own houses. This is going back 20 years ago. That has been stopped by and large by the section 39 organisations because of the level of bureaucracy and challenge that exists within them. In some instances, there is availability of funding from the State. Some of the organisations and the service providers were very good at this 20 years ago but because there is so much responsibility on them now from HIQA and other challenges, they have to deal with the day-to-day. They can never look at forward planning and engage with the State on how best they can future-proof there. The stats that are coming through on people with disabilities and kids with disabilities are absolutely frightening. One parent I was talking to over the past week or so was frustrated with this but we had a very lengthy conversation. He referred to how it would be if some people would just do their job. There are positions within the HSE and within organisations and Departments. People are looking for direction from them and the next thing is somebody is not responding immediately. I listen to some of the documentaries that have been done about the State, and indeed, other states. I look at some of the European states that are outliers with regard to providing services as well. If only they collectively took responsibility and had the accountability that the witnesses spoke about. We all need to be accountable. Our committee needs to be accountable. We need to make sure we are voicing the concerns of the people with lived experience of disabilities, and their families and communities, on a weekly basis to highlight the inadequacies within the system.
The accountability may have to be at every single level. It would be great to have a new strategy but it would have to be implemented to the letter of the law, to the dot of the i and the cross of the t, and not just another aspiration. That is what we need to look at. As a committee, we will have to look at what information is within Departments. The State will have to address its responsibilities and apologise for what has been done. As we look at it now, I can see why there were challenges in the past because there are certain areas where jobs are not being done to the level they should for the people with disabilities. Senator Clonan was talking about people coming back to their elderly parents. They are coming from the day services which are cut because there are challenges in funding and so forth. There are an awful lot of people out there who have carried the burden for 40 or 50 years and who are now coming to the end of their tether and their lives. They are worried throughout their lives. We need to put that first and foremost.
I thank the witnesses for their honesty, engagement and for their very knowledgeable understanding of the system. What we need to do now as a committee is to take what they have said and what our members have said and, every day we have a public meeting, advance that again. Sometimes we get very frustrated. This frustration is born out of the fact that the money is there. I will conclude with that; the scene of the Minister being in with the officials of the State who were to provide the services and the Minister having to walk out in frustration. That tells us something about the attitude. I always think at this committee, which I have been honoured to chair for the last number of years, if the attitude could change along the way and people could actually say that their job was to make sure that their organisation was responsible, it would be great. Some of the organisations find it difficult to recruit and retain staff. If the proper supports were there and if the people who were walking into those jobs in the morning and coming out in the evening felt fulfilled, it would be different. We have heard anecdotally that those in children services who are pushing to make sure seven people are seen per day rather than two, are being looked down upon by some. That is not coming as fake news; we are hearing it every day.
There is the time-honoured practice that when people get to a certain level they go into the State services, the public services, for jobs. We see people who are in the public service in jobs dealing with disabilities leaving them and going out into private practice because they cannot cope with the bureaucracy of the system.
I apologise for rambling on but I thank the witnesses sincerely for their honesty. If there is anything they think should be brought to our attention, or that we can advance or give a public airing to, do not spare us because that is our job. Our job is to try to make the best of it for people with disabilities. We have a number of committees going on here but we have a very good and genuine group of people on this committee who want to do the right thing and advance it. I thank the four speakers very much for coming in. It is late in the evening. They should keep up the good work and make sure if they think we should be doing more on our committee level not to spare us.