Assessments of Needs for Children with Disabilities: Engagement with Ombudsman for Children

I welcome Dr. Muldoon. He will be addressing the committee from meeting room B in LH2000. I also welcome his colleagues accompanying him, Ms Karen McAuley, head of the policy department; and Ms Ciara McKenna-Keane, external investigator.

Witnesses are protected by absolute privilege in respect of the presentations they make to the committee. This means that they have an absolute defence against any defamation action for anything they say at the meeting. However, they are expected not to abuse this privilege and it is my duty as Chair to ensure that this privilege is not abused. Therefore, if their statements are potentially defamatory in relation to any identifiable person or entity, they will be directed to discontinue their remarks. It is imperative that they comply with any such direction.

The purpose of this afternoon's meeting is to discuss with the Ombudsman for Children the contents of his recently published report, entitled Unmet Needs, which is a report on challenges facing children who require an assessment of their needs. I remind members that they should adhere to the content of the report when putting their questions to Dr. Muldoon. The committee will wish to engage with Dr. Muldoon again in the near future to discuss other issues he considers should be brought to its attention. The secretariat will be in contact with him to arrange this additional meeting.

I invite Dr. Muldoon to make his opening statement, which will be followed by a question-and-answer session with members. I will call on members in the order in which they indicate.

Dr. Niall Muldoon

I thank the committee for the invitation to appear today to discuss Unmet Needs, our report on the challenges faced by children in Ireland who require an assessment of their needs. As members of the committee are aware, the Ombudsman for Children’s Office, OCO, is an independent statutory body, which was established under the Ombudsman for Children Act 2002, as amended. The OCO has two core statutory functions, namely, to promote the rights and welfare of children under 18 years of age and to examine and investigate complaints made by, or on behalf of, children about the administrative actions of public bodies, schools or voluntary hospitals that have, or may have had, an adverse effect on a child.

The rights and welfare of children with disabilities has been a strategic priority for my office since 2016. In our strategic plan for the period 2019 to 2021, we committed to continue to pursue the progressive realisation of the rights of children with disabilities. Published in October, the Unmet Needs report sets out the challenges experienced by children who may have a disability and require an assessment of their needs. The report proposes actions that we believe should be taken to address these challenges in a child-centred, rights-based manner.

Every child with a disability in Ireland has the right, under the United Nations Convention on the Rights of the Child, UNCRC, to the highest level of health and education so as to fulfil their potential as human beings. This report raises serious concerns about ongoing violations of the rights of children with disabilities. This includes the significant delay in accessing an assessment of needs, AON, despite the HSE's legal obligation to commence such an assessment within three months of receipt of a child’s application. Between 2017 and 2019, the OCO received 95 complaints from parents regarding their child’s access to a statutory AON. Parents related their concerns about the potential adverse effect of this delay on their child’s development.

We are all aware that children’s earliest years are the foundation for their physical and mental health, emotional security, cultural and personal identity, and developing competencies. While the report highlights the stories of Andrew, Lucy, Michael and Sarah individually, we know that some 6,058 children are currently overdue an assessment, with less than 10% of assessments being carried out within the statutory timeframe.

As members know, in September 2004, the Government launched the national disability strategy, NDS, with the aim of supporting the equal participation of people with disabilities in society. It was envisaged that the NDS would lead to an equitable reconfiguration of disability services. The Disability Act 2005 and its counterpart, the Education for Persons with Special Education Needs Act 2004, the EPSEN Act, were key elements of the strategy. The 2005 Act provided for an assessment of needs in order to determine the health services required by a person with a disability. The EPSEN Act provided for an assessment of special educational needs so that a child with such needs may be educated in an inclusive environment. While the 2005 Act was commenced in full, sections 3 to 13, inclusive, of the EPSEN Act, which concern the assessment of special educational needs, have, to this day, not been commenced. In the absence of a procedure under the EPSEN Act, students who require an assessment of their special educational needs are applying for an assessment of needs under the 2005 Act. This places enormous pressure on the 2005 Act mechanism.

A deficiency of resources allocated to meet the demand for AONs has also hampered the effectiveness of the 2005 Act mechanism. There has been a significant increase in the number of applications for AONs over the last ten years, exceeding the capacity of services to meet this demand. The HSE’s national service plan for 2020 projected that only 9% of AONs would be completed on time. In addition, there is a reported lack of consistency in approach to AONs across the community healthcare organisations, CHOs. Furthermore, as members of the committee know, since the 2005 Act came into force, national policy and programmes have moved towards a needs-led, rather than diagnosis-led, service model. For this reason, the 2005 Act mechanism, as drafted, is at odds with the principles that now underscore national policy in this area.

Having considered the perspectives shared by children and parents, we propose the following priorities for action to address the challenges arising with respect to AONs. We call on this committee to advance a review of the 2005 Act, with particular consideration be given to: a section setting out guiding principles which must inform the interpretation and implementation of the Act, including the recognition that children with disabilities are entitled to enjoy a full and decent life in conditions which ensure dignity, promote self-reliance and facilitate the child’s active participation in the community; the amendment of section 2 to a definition of disability which is rights-based, child-centred and inclusive; the amendment of section 7 to ensure a best interest, holistic, multidisciplinary, needs-based approach to assessment of needs; and the amendment of section 18 to expand the powers of the disability appeals officer to provide compensation as a remedy for breaches under the Act in an effort to drive the State towards a better adherence to its statutory obligations and timelines.

The commencement of sections 3 to 13 of the EPSEN Act must also be considered. Legislative underpinning for the special educational needs of children is vital to ensuring that children’s needs are identified and met in a timely and appropriate manner. There must be a whole-of-government review of the access criteria for all services for which a diagnosis is still generally required, to ensure a clear pathway to services for all children according to their needs.

The OCO recommends that an independent expert group be established to review the 2005 Act, having regard to the EPSEN Act, and related legislation which impacts the provision and delivery of assessments of needs and special educational needs assessments.

The OCO is also supportive of the establishment of the Joint Committee on Disability Matters to assist in monitoring and implementing the provisions in the UN Convention on the Rights of Persons with Disabilities, UNCRPD. The State’s commitment to protecting and affirming the rights of people with disabilities would be further cemented by the ratification of the optional protocol to the UNCRPD, which would allow persons with disabilities to make individual complaints to the UNCRPD committee.

The OCO proposes the formal establishment of an interdepartmental group on children with disabilities, which should prioritise actions that address the early identification, early intervention and early treatment of children with disabilities. The OCO considers that significant investment is needed in this area. The current projected out-turn of only 9% of AONs being completed within the timeframes suggests that a tenfold increase in expenditure may be required. The State, via the HSE, must ensure the provision of adequate financial, technical and human resources to the national disability children and family teams to manage assessments of need in a timely manner.

The OCO supports the development by HIQA of a new set of national standards for the assessment of need for children with disabilities. We have proposed that these be aligned with wider national children’s standards to improve the experiences of all children using health and social care services. Unfortunately, we found out only yesterday that this will not happen, as HIQA is putting its resources elsewhere. We find that very disappointing. The OCO recommends that the State ensure that a functional and accessible complaints mechanism remain in place and that the reimbursement of private medical fees incurred by a parent in securing alternative services, as a result of delays in receiving an assessment for their child, be considered.

The OCO also recommends that the HSE collect and create a central database of AON data to identify problems, assess progress in strategy implementation and inform national policy development. We also recommend that the HSE create informational materials on the AON process for both parents and children and commit to meaningful engagement with children regarding the AON process.

It is clear from our report that the international children’s rights framework offers significant guidance to the Government on the general and specific measures it must adopt to ensure that all children’s rights are respected, protected and fulfilled in Ireland. As members of the committee may be aware, the UNCRC committee urged the State to incorporate the UNCRC into domestic law as a matter of priority in 2016. It remains an unfinished project and one I recommend that we complete. Incorporation would give children, young people and their representatives the power to go to court to enforce their rights, with the effect of building children’s rights into the fabric of decision-making in Ireland. I emphasise that assessment of need is simply a gateway to receiving services and the importance of the subsequent availability of services should be recognised.

I again thank the committee for inviting my office to attend. My colleagues and I are happy to take any questions if we can be of further assistance.

I thank Dr. Muldoon. He stated that the OCO found out only yesterday that something would not be happening. Was he referring to HIQA?

Dr. Niall Muldoon

That is correct. We got a letter from HIQA yesterday about prioritisation. We had sought prioritisation to develop new standards for children's assessments of need. HIQA put the request through its process but did not select it as one of its priorities for the next two years.

I thank Dr. Muldoon for that clarification. It is very disappointing, to say the least.

I thank Dr. Muldoon for his opening statement and for the report. The report states that the average waiting time for an assessment of need is 19 months. Despite legal requirements to the effect that the HSE commence and complete an assessment within three and six months, respectively, of an application having been received, this is not being done. What does Dr. Muldoon recommend be done to improve the service? Parents are at their wits' end trying to get assessments of need for their children in order that they can access the appropriate services.

Are long wait times for assessments of need occurring throughout the State, in each CHO area, or are there differing levels of waiting lists among the CHOs? If there are areas where the system is working, can we examine what is happening there and try to replicate it? We need to move away from this post-Covid politics and provide the same level of treatment for everybody, irrespective of where in the State the person lives.

An hour or two ago, I received copies of letters sent to parents of children in my area of Dublin West in respect of Covid. One might ask what impact Covid-19 has had on assessments of need. One letter is to the parents of Teddy, a young boy from Clondalkin on the waiting list to be seen by the children's disability team. The letter states:

As some of you are aware we are operating with a much reduced team in recent months. Some of our team are supporting Covid-19 testing part-time while continuing to work with the team. Recruitment for more permanent staff for testing centres is taking place and we look forward to our team testers returning to us full time in the coming weeks.

To support the processing of the backlog of Assessment of Need (AON) requests in this Community Health Organisation (CHO) some of the team have been redeployed temporarily to assist colleagues across the CHO with this backlog.

Testing and tracing is vital, as we have heard since day one, when this pandemic landed on our shores, but it cannot be to the detriment of a child's development. It seems that the unmet needs that Dr. Muldoon mentioned are being pushed further down the line due to Covid. He might comment on the impact that Covid is having on the service, which was already not meeting the needs of children.

I will read out one of the stories that was told to me in order to put it on the record. It is well documented that early diagnosis, intervention and access to services greatly improves the development of the child. There were four stories in the report, one of which, about a girl called Sarah, stuck with me more than the others. The report states:

Sarah has been privately assessed as having ASD. She also has sensory issues, is unable to wash or dress herself, and her co-ordination is poor. When she was four years old, her mother applied to her local HSE Early Intervention Team for an AON. She was informed that Sarah would have to wait at least 27 months for an AON and that, when she turned five, she would be transferred to the School Aged Team waiting list. Sarah would not receive any priority on that list, despite ‘aging out’ of the Early Intervention Team waiting list.

This seems to be the case across the spectrum. When kids get to a certain age and have not had their needs met, they put back to the bottom of another list. That needs to be addressed. The report goes on:

Sarah’s mother complained to the HSE regarding the delay. Her complaint was upheld but Sarah has still not received an AON.

The report states that 100% of complaints in 2018 were upheld. That is a damning indictment of the system. All the complaints were upheld, yet still there have been no changes. If a child gets treatment when he or she needs it, he or she will be less likely to need acute adult services. Prevention is better than the cure.

The OCO could probably write another report to answer my questions but I am not asking for comprehensive answers to all of them. What are the problems with the assessment of need process? I acknowledge that our guests have mentioned some of them. Is it a funding issue or a lack of resources? Is there an issue with the recruitment and retention of staff? Are there systemic failures or is there a lack of political will? Is it all of the above? How can things be improved? That is the question that parents have been asking me today. They are at their wits' end and some of them are pulling their hair out trying to get the services their children deserve.

Dr. Niall Muldoon

I thank the Deputy for his questions, which I am happy to address. On the Covid-19 implications, we certainly know from complaints we have received that children with disabilities have been left behind again in this case. The redeployment of staff to various roles relating to Covid-19, whether testing and tracing or whatever it might be, has left a gap of seriously experienced and qualified individuals not being available to children who need assessment.

That is not even robbing Peter to pay Paul, it is just robbing Peter and leaving nothing for Paul. That was an unfortunate decision and, especially at this stage, we should be able to bring back our professionals. Health and social care professionals should be back working on the front line of their areas, whether as an occupational therapist, OT, speech and language therapist, SLT, or therapist of any other kind. The situation that the Deputy talked about in his constituency is mirrored across the country, where healthcare professionals were moved into Covid-19 support. My instinct is that we have a lot of people who are not working and I would have thought we could have trained them up quickly to do testing and tracing. It is a shame that we use professionals who would otherwise be treating our children.

The Deputy also asked about funding, resources, retention of staff and political will. What we are seeing here is decades of dereliction of duty by previous Governments when it comes to funding and resourcing disability services. No Government can stand proud and even though funding has increased over the past ten years, the service and system have not changed. The Deputy mentioned the case report of Sarah and that was a great example of a system that set itself up to ensure that children do not get in. A three-year-old child goes on a waiting list which expires when they are five. If one knows that the waiting list is two and a half years, then that system is geared against the child. The Government and the HSE needed to have changed that over the past ten years and it has not happened. That is a matter of political will to push things to change. It is also a matter of political will to fund it in the right way and to get the right number of professionals on board. There need to be staff resources, retention of staff, an increase in the training programmes earlier on so that enough social workers, SLTs and OTs come out of the system.

The Deputy also asked what we would recommend when the average waiting time is 19 months. There are a couple of things to recommend. The Government should stop taking parents who challenge it to the High Court and paying huge legal costs to bring parents who are suing on a legal obligation that the Government has in legislation to court. That would save money that could be diverted in the right direction. We need to look at how the system has adapted. We need to find enough appropriate professionals to do the assessment of need. I am very much aware that the Minister for Health, Deputy Stephen Donnelly, and the Minister of State with responsibility for disability, Deputy Rabbitte, have put together €7.8 million to try to reduce the waiting list. I hope that works but it must work in a way that does not just move people from one waiting list to another. That has been an old-fashioned, three-card trick of the system that has been played by the services. We cannot allow that to happen anymore. Our eyes are open now and we cannot be tricked again. The situation needs to be clear for the future for every child. Coming off the waiting list has to mean the child is accessing services and not just having the assessment done.

The Deputy also asked about differences in geographical region and community healthcare organisation, CHO, area. I will hand over to my colleague, Ms Ciara McKenna-Keane, on that issue.

Ms Ciara McKenna-Keane

There is a lack of consistency between CHOs, as we addressed a little bit in our report. From the HSE quarterly reports, we know that there has been an increase in the volume of assessments of needs within all the CHOs. There is certainly a divergence and disparity in terms of the final number received, how quickly the assessment reports are completed and how quickly the service statements are finalised and the services provided to those children. It reflects a lack of cohesion and consistency in approach across assessments of needs within and between CHOs. We deal with it a little in the report. As Dr. Muldoon has stated, the standards for assessments of needs were actually devised during the interim HIQA in May 2007 and I think HIQA itself would say that they are outdated. We had put in a proposal for that to be prioritised. That will not happen and perhaps it will go in the mix in August 2022. In the meantime, we need to look at what can be done to standardise approaches and make sure that the actual care received by the children is measured against optimal care. These children need early intervention and services to meet the needs assessed.

The other issue in this area is the standard operating procedures that were introduced by the HSE. They now have preliminary assessment teams who are doing a 90-minute assessment with two professionals within a three-month time limit. While they are keeping within the time limits of the Disability Act, the actual substance of the assessments is, arguably, not as sufficient as that envisaged within the Act. Timelines are being met but obligations under the Act are not. That is another issue. As Dr. Muldoon has stated, we would be in favour of an expert group on children with disabilities to look not only at a review of the Disability Act and how it would align with the Education for Persons with Special Educational Needs Act, which is a little more needs based, but also how, in practice, that legislation and those regulations are implemented in terms of the assessments themselves and how services flow from those assessments. While it is disappointing that HIQA will not be looking at this, there is still something that can be done in this area. We can also align it with policy changes that have taken place since 2005 whereby there has been less of a diagnosis-led approach and more of a needs-led approach that looks at the child holistically. That is required under the United Nations Convention on the Rights of Persons with Disabilities and the United Nations Convention on the Rights of the Child.

I thank Dr. Muldoon and his team for coming in today and for the work they have done on their report. It is an important piece of work that brings together all the issues, stories and concerns of parents. It is a complex area for parents to try to navigate. It is an incredibly frustrating and worrying area for parents and I imagine many of them are appreciative of the work our guests have done and the light they have shone on the area.

There is a series of recommendations in the report. Has the Minister or the Department sat down with our guests to go through the recommendations in the report to see what progress can be made on them?

When one goes through the report, what stands out are the stories of the four children, the impacts on them and their families, and how long it went on for. The report states that Lucy is now 11 years of age and is still not receiving any of the clinical services assessed to meet her needs as a six-year-old. How difficult that must be for Lucy and her family. While Sarah's complaint to the HSE was upheld, she still has not received an assessment of need. Our guests brought the issue as far as a point where they could highlight those cases, but has anything happened for those children since our guests raised the matter? Do they think that the office of the ombudsman has enough power? It can highlight these sorts of things, but is there anything that would benefit the role and office of the ombudsman to try to bring these cases forward a bit more, rather than just highlighting them and leaving it to the Department or the Oireachtas to resolve?

A new system is being brought into play. I have been talking to many people in the area who are concerned about what it will mean for children accessing the correct resources for their needs and that it might be a tick-box exercise that will put everything for children on the long finger and further disadvantage them. What are our guests' feelings about the new system that is being brought in?

Dr. Niall Muldoon

I appreciate the Deputy's kind words about the report. We have not yet sat down with the Government. The report came out in October and we decided to wait and see where disability was going to sit. I have a letter for the Department and I hope soon to have a meeting the Minister of State, Deputy Rabbitte.

I met the Minister for Health, Deputy Donnelly, prior to the report going out and I flagged it with him. They are certainly happy to engage with me but I have not set up a meeting to do that yet, because I was not sure whether it was the Minister for Health or the Minister for Children, Equality, Disability, Integration and Youth that I would need to engage with. I hope we will try to do that before the end of this year, and that we can sit down and thrash out what can be done from here.

The four case studies are there but the latest figures we have, which were reported in a Sunday newspaper, is that more than 6,000 children are waiting for an assessment of needs, so any one of those could have a story like this. It is heartbreaking to see it consistently. I have been in office for five years and I was working as director of investigations before that so I am aware of this being a situation for the past eight years. There is a lack of progress and a lack of planning to get the resources in place to allow the assessment of needs to go ahead so that, in turn, children get the services. There is no point in giving platitudes to parents to say how brilliant they are doing. We need to make it as easy as possible. It is such a tough job looking after a child who has additional needs. It should be made as smooth as possible to get all the services that are needed. One parent described herself as a psycho parent. In order to get anything, one has to scream loud and consistently and that is not the way we should set up our system and society. It is a really difficult one.

As regards the standard operational procedure, my colleague outlined the new process. There are question marks over whether it will provide what we want it to provide in terms of the 90-minute assessment. I worked previously as a psychologist and I am aware of what was involved in the previous level of assessment of needs. It could take up to three months to do it, with three or four professionals involved. One might see a child for the first day and he or she might just run around and it is very difficult to make a call for the first half an hour or hour and then when one meets the child the following week, he or she might trust one a little bit more. One builds up a rapport and one can see what the child is doing. One might go to visit the child in school. It takes time to get a sense of where a child is at. It is unusual and difficult to do it in 90 minutes.

I will hold judgment on what happens because I am very aware that there is supposed to be a review of the standard operational procedure within the first 12 months. I look forward to seeing what the health and social care professionals will say about this. I know there has been some disquiet, but we will have to see if it works and if we get 6,000 children off the waiting list with a proper assessment of need that outlines the services they require. One of the points made by the Department two years ago when it was expecting to move in this direction, is that the preliminary assessment would provide a gateway for children who did not need a full assessment of needs to get into other services to have their needs met. As long as we see that sort of diversion, that will be progress, but I am concerned that some professionals might decide they cannot make a decision in 90 minutes and then all we are doing is kicking the can down the road. It is something I have heard concerns about but I will not make a call on whether it is good or bad yet. I will hand over to my colleague, Ms. McAuley, who will speak about the extra powers and any concerns we might have in that regard.

Ms Karen McAuley

Deputy Whitmore's question is very important and interesting. As the committee is aware, our role as an office both in terms of our statutory complaints function and our role to promote the rights and welfare of children is a means through which we can independently assess issues affecting children and children's rights across the country, and not only to identify problems but to identify actions that we feel need to be taken in order to address those problems.

In working to highlight issues affecting children and their rights, including the assessment of needs and children with disabilities more generally, what we are trying to do is influence positive change with and for children. While the office is trying to influence change, it is not necessarily our statutory role to make those changes so, for example, it is not our role to legislate and we have no power to make budgetary allocations or to recruit staff or ensure services are adequately planned, co-ordinated and resourced to meet the needs of children and young people. I am not sure if there is a problem with our powers per se, but the reality is that what we are there to do is to highlight problems that children and young people across the country are facing in different aspects of their lives and to try to identify measures we feel are needed to address those problems, some of which may be implemented in the short term and others which may take more time, with a view to encouraging those who are mandated and have responsibility to deliver for children and young people through those measures to do just that. We are going to be initiating a review of the Ombudsman for Children Act very shortly. All going well, we hope the work to review the Act will be completed by quarter 2 of next year. We are going to be considering a wide range of matters in terms of whether the powers of the Ombudsman for Children's Office under the Act are adequate. Without trying to sound smart about it, it is important to bear in mind that we are not mandated and, ultimately it is not our role, probably rightly so, to do the job that others have responsibility to do. I hope that makes sense.

Yes, absolutely.

I welcome the witnesses. I thank Dr. Muldoon for the publication of his excellent report. I wish to touch briefly on special educational needs. An area that is not talked about much is the lack of autism units at both primary and secondary level. Parents find it extremely difficult to get places for their children. The places are at a premium. Children remain in the ASD unit until their schooling ends, so the challenge is that there is not room for additional children. The issue is whether they can be facilitated in whatever school or community setting they are in until the older student leaves. It is becoming a major issue among the parents I meet. They face the worst possible news that there are not resources or a place for their child. The lack of early diagnostics or assessment of need is a significant issue. Children in ASD units thrive in primary school and when they leave they possibly do not have a place in a secondary school. It is a challenge to be put into a mainstream classroom. It is not appropriate and does not meet their needs. I ask the witnesses for some of their expertise or feedback in this area. How do we face this challenge and meet the needs of parents and children? How can we rectify the situation?

Dr. Niall Muldoon

Certainly this is an issue we are very much aware of. It is something I am in the process of looking at separately at the moment. We heard of a high profile situation last year in Dublin west where more than 80 children were due to start national school and there were no spaces for them. That led to the utilisation by the Minister for Education of a special power to designate a school to take children with special needs. That is a nuclear option which suggests that the system has let the children down again. Most of the children would have been identified as requiring a place from the day they were born, or very soon afterwards. The fact that the Department of Education's building unit did not have the spaces in place is a real indictment of poor planning. My understanding is that it happened in a number of places again this year in Dublin south and in Cork. We need to commit public servants to find a way to make this happen, to plan ahead, to understand what the needs are, to know what the population is like in the local area and to provide for those children in a proactive manner, not retrospectively or by forcing principals on the last day of June to come up with a space by September. It is a failure of the system when one gets to the stage where the Minister has to press the nuclear button on a designation. We are going to take a look at that and see if there is any way we can push the Government and the services to do better in that regard. It is a real indictment of the service provided to children and to parents. Parents are the ones to push.

Even where designation happens, it does not always happen in the area that is most suitable for the children. Many children, especially in Dublin, will travel 15 or 20 miles to attend the nearest school that provides a service. That is a long journey on public transport in a Dublin setting. In rural areas, children might have to travel 40 or 50 miles on a school bus or in a taxi.

We need to commit to planning ahead with multi-annual budgeting so that, knowing the number of children being born who are recognised as having additional needs, the schools will provide for them ahead of schedule. All new schools being built are being designed with special education classrooms. The National Council for Special Education, NCSE, is considering a plan for the future of education for children with special needs. That may include more campus-type settings where all of the children would be on the same campus. All of these initiatives are positive but the simple question is, how many children in our respective areas need special classrooms or supports? That information should not be difficult to generate in this day and age.

I am sorry for the parents who find themselves in this situation. I have engaged with the Minister for Education, Deputy Foley, on this matter. I brought it to her attention the first time we met. I will follow up on that in the near future.

Does Deputy Dillon wish to make a further contribution?

Yes. Distance to services is a significant challenge. Many people are travelling from Mayo to Galway just to access a special needs school. The challenge down the road will be deciding where these kids will go after primary school. Is there a possibility of building extensions to secondary schools to not only accommodate them in a special setting, but also integrate them in the overall education system? We probably need to meet this challenge head on. I acknowledge Dr. Muldoon's comments and appreciate them.

I call Deputy Sherlock. He should unmute his microphone.

I wish to record my appreciation for Dr. Muldoon and his colleagues appearing before the committee and for their report, which has given us a clear framework and overview. It has given me some riding instructions on where to pursue the specific issues. On foot of the report, I have been submitting parliamentary questions that seek to gain answers in respect of metrics and where moneys will be allocated across the CHOs for assessments of needs. What is becoming apparent to me is that there is a major disparity between individual CHOs. For example, if one is living in CHO 1, the funding allocated from the €7.8 million is €214,000, but if one is living in CHO 9, the allocation is approximately €1.9 million.

My question is on processes and standardisation. This is a small country and I do not understand why there is such disparity between the CHOs in terms of the progressing disability services, PDS, programme for children. I am still unclear as to how the children's disability network teams, CDNTs, will be able to work effectively based on the funding allocations they have received. Has Dr. Muldoon's office been able to critique that model in any way? I rely on his office and we rely on the replies from the HSE, although it must be said that the HSE has a way of responding to Deputies' questions and couching the language in a particular way that does not always give us the answers to the questions we asked. Based on the allocations provided, I remain sceptical about the ability of each CHO to deliver on the assessment of needs and diminish or tackle fully the lists for initial assessments in the first instance. I would dearly love to hear what the witnesses have to say about whether the teams are the right structures to tackle this problem.

Dr. Niall Muldoon

When I first joined the office, I met a number of NGOs and service providers in the area of disability. PDS teams were being discussed at the time. I remember someone describing the situation as the NGOs and service providers currently providing a Mercedes-level service and being asked to divide it up across other areas so that everyone got a Skoda-level service. I mean no disrespect to Skoda. Everyone got a different level of service, but there was no additional funding, administration, building or office supports to allow providers to do that. This is where the difficulty lies. We believed we could take everything we had, put it into a single pile and divide it equally across the country. That looked good on paper, but then came the negotiations on the division.

That there are different services in each area is an historical issue. Where was the best charity and where was the most funding coming through charities? Did St. John of God, the Daughters of Charity or the Brothers of Charity have better fundraisers? Were they better negotiators of service level agreements, SLAs? It started there and has been retained in that way. That is how it has been in CAMHS and mental health more widely. For example, if there was a psychiatric hospital in an area, that area got more funding when the hospital closed down. We tried to build on top of rocky foundations and adjust from there.

Each team can work effectively, but we must acknowledge that we will probably have to provide it more funding and services and better administrative teams and allow the professionals to do their jobs. The principle behind PDS so that CHOs have equal opportunity is right, but a greater level of resourcing needs to be considered.

Ms Ciara McKenna-Keane

This issue was highlighted by the Joint Committee on Health in, I believe, July 2018. It called on the HSE to reconfigure the CHOs, recruit additional therapists for disability teams and provide those teams adequate resources without delay. Dr. Muldoon will agree that all of that needs to take place. There is a lot of great stuff to be found in PDS. For example, it considers needs as opposed to diagnoses purely. In this way, a child is not just reduced to his or her impairments and is instead seen as a whole person. National access policy is all needs led rather than diagnosis led. There is some good stuff involved and there are great professionals on the ground. As Dr. Muldoon stated, however, that if they are not being empowered with the requisite staff - Covid has presented an issue in this regard, with people being diverted elsewhere - and resources to conduct assessments of needs, as prescribed in the Disability Act 2005, with a focus on needs as opposed to a pure diagnosis focus, their hands will be tied. Unfortunately, we need to consider the issue of resources again in respect of this aspect of our report.

I thank Ms McKenna-Keane. Dr. Muldoon mentioned CAMHS. Is it his view that it operates differently depending on the region? It could be argued that there is a perception that the culture within CAMHS in some regions - these are my words - can be enclosed and silo based depending on which party of the country one is in and there is a protectiveness about each region's work such that it might be difficult to deconstruct the culture in order to deliver the service where it is most required.

Dr. Niall Muldoon

I was not necessarily preferred for the CAMHS question but I cannot disagree that they are autonomous agencies. That is probably a product of history. Each consultant psychiatrist has a way of running it and children have fallen foul of that at times. We have many complaints about a child being recommended to go to a CAMHS bed by a consultant psychiatrist, then when the child gets to the CAMHS bed, the consultant psychiatrist there disagrees with the diagnosis and the child is sent home again. These things make one think that this is not child-centred and not about the best interests of the child. Having not prepared for that today, I will leave it at that.

Will Dr. Muldoon confirm that what he said in his opening statement in respect of reimbursement was that there should be reimbursement for those families who seek a private assessment of needs? This would chime with many of us who want to see children get the services. If there was a mechanism for reimbursement by the State for those services, that would assist us greatly in dealing with these issues.

Dr. Niall Muldoon

Yes, we would have said that. I do not see it as a core pillar for the future but it is a way of driving change. If people are being punished in some way by a lack of services, this is the way to go. It is in line and could be thought of like treatment abroad and other systems that we already provide, such as the treatment purchase fund. Our rationale behind it is to try to improve the system. It is not needed but we have parents who are able to access that, and if they know that they can access it without having to borrow from the credit union, put themselves into debt, or go without food, it would make things much easier.

Is there a standard international metric of the cost of assessment per child? The new standard operating procedure for assessment of need was addressed in a reply to a parliamentary question of mine, which stated that the HSE has developed a standard operating procedure for the assessment of need process to ensure that children with disabilities and their families access appropriate assessment and intervention as quickly as possible, and the approach of assessment of need is consistent across all areas. This ultimately comes down to funding, resources and money. We know what the price of an assessment of need is in the private sector. I do not know if there is a costing in the public sphere. If there was an internationally recognised cost, depending on the needed level of intervention, that would help us in our understanding when interrogating the figures that the Minister, whoever that might be, puts before us.

Dr. Niall Muldoon

We never got to that level but I agree with the Deputy and if we had a comparison, it would allow people to challenge, question or push the Minister. I am not sure where one would get that. Perhaps the health and social care professionals might have a figure such as that, being closer to the matter than me.

I thank the witnesses for the documentation that they sent. I have read it. I was delayed in the Seanad so I have missed much, and I apologise if I ask anything that has already been said. I am quite transfixed by the line in Dr. Muldoon's report about children which states:

They are instead ‘reduced’ to their impairments. In contrast, the rights-based model of disability recognises that disability is a social construct and impairments must not be taken as a legitimate ground for the denial or restriction of rights.

That paragraph is fantastic and encapsulates everything that I have ever believed regarding disability and children, and being children-centred. I would value the witnesses' input, as opposed to me asking questions. Representations that I hear when I am out and about relate to babies born with a disability that does not require later diagnosis. For example, if a child has Down's syndrome, it is apparent from birth, yet within the health-based model and it being a health matter, we find that there is an initial support in hospital and supports then fall away. A medical card needs to be applied for. There is a delay in assessment by a child psychologist. People are advised to go to private services because they may be in a postcode lottery for whether they will get a child psychologist. When it comes to crèches, they need to fight for an access and inclusion model worker to work alongside the child. I am interested in levels of complaints, investigation, and the witnesses' general view on that and what could be done to arrest this quickly. What would the witnesses say about where I should go next as a Government Senator?

Dr. Niall Muldoon

This report, Unmet Needs, is about assessment of needs, but we recently presented a report about a young girl called Molly, who was born with a serious disability and was in foster care, unable to care for herself in any format. We continuously recommended to various Departments that there is an ability to plan ahead for children like that and recognise what they will need on an ongoing basis. If children are severely or profoundly disabled, it will be known whether they will need wheelchairs or hoists, and as they get bigger or older, the parents will need different transport. All those things can be planned for. It is time to move in that direction. The HSE needs to get multi-annual budgets for such children. We fought long and hard with regard to Molly. There were more than 400 children in foster care with severe and profound disability, and the HSE and Tusla are going to work on a ring-fenced budget for that.

Last week, we presented a case regarding Jack, where we are looking for a ring-fenced budget for a child who was in hospital with severe disabilities, and stayed there for more than two years because the HSE and Tusla could not organise or agree who was going to look after the child. We now have commitments from both the Minister for Health and the Minister for Children, Disability, Equality and Integration that that ring-fenced support will be there between the two agencies. I always give the example that if the parent of a child sues the State and wins, the High Court will come up with a figure of €5 million, €6 million, €10 million or whatever it might be. We can produce that figure from the first day and say that we will allocate as it is needed and support the child, whether it is with a medical card, transport or education. We do not need to make it as difficult as we do if we plan ahead and ring-fence those budgets. It is a matter of rearranging how we plan things.

At present, we have a system from 30 or 40 years ago that has never caught up with the real world and children's rights at the centre of our system. Reducing them to their impairments allows a person to be impersonal and make decisions that just relate to the system and say that a child does not tick the box. We have to put the child at the front of every decision that public servants make, so they see the child, whether Jack, Molly, Sarah or any child in a case study in this Unmet Needs report, and make decisions accordingly. The essence of children's rights and of human rights is that decisions are made based on the needs of that individual. If a child is born with a disability, those needs are predictable. While we will not get it right all the time, if we budgets €100,000 for that child and it is not used this year, then it will roll over to next year. The parents can come and say that their car is five years old and ask for help, or that they need a new wheelchair, and we can say yes to those requests, since it is in the budget.

Those sorts of things can make life so much easier for children and their parents. There is a fallout for siblings and other members of the family as well when families have to fight and struggle for these things. It is heartbreaking for other family members to see this and to see their parents struggling to get basic needs for their child. I would say that we need to start revamping the system so that we can budget for the predictable needs and put them in place. Obviously, the members, as politicians, like to be able to adjust budgets accordingly, which is fair enough. We all work to long-term budgets and then reduce them as circumstances change. Again, the principle is established that if one is born with a disability, one is entitled to X, Y and Z and that should be a given. It can be discussed from there on in as opposed to fighting every two years, when a medical card needs to be renewed, to prove that one's child still has a short foot or still needs the use of a wheelchair. These are distressing things that do not need to be there and are not in the essence of children's rights. Perhaps I will leave my comments there.

My impression is that the recommendations for data collection would arrest a lot of that because there would be a central pool where one would have access to information and a multidisciplinary and multidepartmental approach.

Dr. Niall Muldoon

Yes. Any business nowadays is looking that way and considering how all of the units help each other, what can be learned from unit A to unit B, and how one can cross-fertilise information so that we can all do a better job. The rationale for the data gathering is that every healthcare professional feeds into it and then the Government, as a whole, understands that. At the moment the data is not gathered. In the Molly case, we asked how many children with severe and profound disabilities are in foster care. Three years later, the HSE still would not agree how many there were after Tusla had said there were over 450. The HSE will not agree because if it does, it will have to deal with the issue. It is the gathering and naming of data that allows one to make decisions and if the HSE does not gather data, it can avoid making decisions.

I apologise for being late. I thank Dr. Muldoon for his report and the important work he does on behalf of children and their families. Being a parent is probably the scariest thing that most of us can do as it brings enormous responsibilities and none of us knows what visible or invisible challenges our children will have. The report confirms the sad reality for many parents and children, which is unacceptable. I know many parents and young children with challenges that range from not so significant to significant. What Dr. Muldoon said about a failure to focus on the child, and a failure to allocate resources and responses based on the child's need, is spot on. We need to change that if we are going to value all of our children equally. We need to organise our resources to respond to the child's needs as opposed to all of the other things that are going on around that child's life. Dr. Muldoon has given examples.

In terms of the battles I have seen parents having to undertake, it is enough to be rearing, caring for and nurturing one's child, while possibly having other children as well. These parents should not have to battle and constantly justify. The default in my part of Dublin is for many parents to borrow money from credit unions or grandparents to get a private assessment of needs, which should not be the case. That at least gives many parents an assessment of need but it is not enough because they must undertake all of the other battles that follow on from there. There is often an insidious insinuation that if people can pay for a private assessment of need, what else can they pay for? It should not be like that. The child cannot pay for anything. These are young children. As a committee, we need to forward this report to the Minister and seek a response. The report contains some strong recommendations which we should champion and progress within the Government. There is a new Minister so let us try and do that.

I wish to mention two areas that I would like the Office of the Ombudsman for Children to keep an eye on and maybe undertake some work on, if possible. One is the assessment of special educational needs. The housing needs are enormous as well, but this is not necessarily recognised or taken into account. We have a housing crisis but the Department of Housing, Local Government and Heritage, the approved housing bodies and the local authorities need to standardise. A child's diagnosis of special needs should be recognised as a qualifying housing criterion and resourced accordingly.

I have come across a number of cases in which there has been a real gap in the progression of care and response to the needs of children as they have become teenagers, young adults and then adults. While I appreciate that Dr. Muldoon is the Ombudsman for Children, I believe it is worthwhile to flag this gap with him. I ask him to come back to the committee to debate this issue at a future date. I am experiencing quite a number of families who have young adults now but once a child reaches 16, 17 and 18 years of age, and then reaching their 20s, there is a bit of a gap. Their parents and families are having to start the process all over again. That introduces a whole new stress and disruption for the individual child and the family. I thank Dr. Muldoon for all the work he is doing and for his report.

Dr. Niall Muldoon

I thank the Senator for her words. She highlighted the failure to focus on children and allocate resources for them. From our point of view, one of the recommendations that would go a long way would be the incorporation of the UNCRC. As a nation, moving in that direction should not be so scary because the Scottish Parliament is debating whether to do so this week. Our incorporation of the UNCRC would put children at the centre and be a step further than the constitutional referendum of 2012. That is something that the committee, as legislators, could think about moving forward on.

In terms of future work, we have had complaints relating to disability involving the adjustment and renovation of houses for children of certain ages and certain styles of problems. Again, that feeds into the concept that I mentioned. We know these children are going to need help and will need to have the doors in their homes widened. One of the greatest regrets that I have is still the story of a child who grew up immobile. By the age of 12, he was 6 ft 3 in. and his mother was still washing him in a kitchen because she could not carry him upstairs. Those kinds of things can be predicted, funded for and planned for across the board through intergovernmental, interagency and interdepartmental work. Certainly the housing need is crucial from that point of view, with disability being a criterion.

Forward planning is needed as the child moves into adulthood. Different services will deliberately avoid taking responsibility. I have seen situations where the HSE will allow a child to stay in a residential centre until he or she is 19 knowing that Tusla will not evict him or her, but that is playing Russian roulette with a child's life and not planning ahead. The same things applies to children who still live at home as they move from a child's service to an adult's service. That is about predictable transfer. The child's mental health and well-being, and the family's mental health and well-being, can be facilitated enormously by knowing from 16 years of age that we are planning for this, we know how it is going, we are ready to go and we know what will happen so the child has a real sense of progress.

It should not be beyond the wit of our services to provide that sort of thing, once there is a commitment to putting the child first.

I apologise. This is really 2020, in that I have been attending three meetings simultaneously, two of which are virtual. I am listening through headphones and watching on screens.

Dr. Muldoon will be glad to know that I have saved the best meeting for last. I read his statement last night and I thank him for all the work that he and the Ombudsman for Children's office are doing for children. I am a father to three young children aged five, four and two, and when they go beyond our front door in the morning, we entrust them to teachers, who are excellent, but we also rely on offices such as Dr. Muldoon's to be guardians for all children in the country.

I wish to make a number of points. To put them into context at the outset, I was a primary school teacher for 16 years until February 2020, so I have seen the best and worst in State supports. I also have seen the very best in respect of how teachers and parents cobble resources together, deliver and do their best for children regardless of the circumstances. First, I want to focus on the private assessment of needs, which has been mentioned already today, whereby parents with the financial wherewithal have private assessments done. This introduces a degree of financial elitism and an element of "we have it, so we can do it" into disability, and disability should not be like that. There was a time when a parent could drive a few miles down the road, fork out a few hundred euro, and come away with a decent psychological report on their child. However, given the spectrum of special needs, they would probably have to get an occupational therapy report next, and could end up forking out €1,000 or €2,000 just to get to the bottom of the cause of the child's difficulties and the supports that are required for that child. There was a time when a parent could go, armed with those reports, to the school principal, and could feed the findings into the chain, right through to the Department of Education, and see the supports slowly trickle into place.

Increasingly, however, private needs assessments are not being accepted and only those referred through the school mechanism are being forwarded onwards to the National Educational Psychological Service, NEPS. NEPS staff have come to my local school and the work they do is fantastic but there are not enough of them. They receive a shortlist of children who have been referred for assessment. Around a week before they come to a school, the principal will ask staff if there are children in their classes that they or the parents feel need to be assessed or reported. A shortlist is then drafted but the psychologist will have neither the time nor the resources to see all children on the list, so each year, there are children who should be seen but are not being seen, who have been referred through that mechanism. That is a very serious issue.

I also want to highlight that there is an overemphasis on the more visible disabilities. Physical disabilities can be seen, and what can be seen can be tackled. That has always been how humankind has seen difficulties and challenges; it is seen and fixed. However, there are many children with conditions such as dyspraxia and others which are unseen and can remain undetected for many years. I know of one local parent who told me that around one week after her son's leaving certificate examinations, he had decided to get his own assessment done, and he realised in adulthood much more about who he was as a person. Through no fault of his parents or the school, he had missed out and this was the fault of the mechanisms of support provided by the State. It is wrong that he left the education system and discovered a week later what his challenges were and how they could have been met in those years before that.

I will conclude shortly but I will make a few more points. I have a huge problem with special educational needs organisers, SENOs. I do not have a problem with them personally but with how they take reports, which contain hours and days of work on the part of educational psychologists - which are hefty, solid reports that dig deep into the needs and challenges of a child with special needs and that contain recommendations on how the child could be supported - and, without qualifications to equal or surpass those of the educational psychologists, interpret the reports and strike out paragraph after paragraph, ruling out support and recommendations. That this is happening shows that there is a problem with the law. If we took the political hats off some of the members attending the committee today, we would see that they have professional expertise. I would not for a moment stand up in any court of law and begin to question their integrity or ability to provide certain professional services, unless I was equally qualified. It is wrong that SENOs are empowered by the State to dismantle and dissect the reports of educational psychologists when they are not educational psychologists. It is fundamentally and legally wrong. I am surprised there has not been a case taken to the High Court on this issue. Recommendations for physical aids and appliances and assistive technology are also being struck out by individuals who are not as qualified as the professional who has recommended the use of these aids and appliances. There is something fundamentally, legally and morally wrong in that.

I want to address a few other points. Irish language exemptions are the bane of the lives of many teachers and parents. I know that people watch these meetings, and before there are comments on Twitter, I wish to state that I am not anti-Irish language. I love the Irish language but I do not love to witness a child struggling with a language that is causing them huge difficulty, aggravation and stress every day. The criteria for exempting a child from learning Irish are too strict. The child must attain results in standardised tests below the tenth percentile in a literacy attainment, which can be in word reading, reading comprehension or spelling. The gauge is too narrow and does not factor in the stresses caused by dyslexia and other issues that could be making it a colossal challenge for the child to learn the language every day. There are children who could function much better at school if that stress was taken away from them. If a child is able to learn Irish, then they should plough on, and I support them in doing so. It was said 20 or 30 years ago that one needed Irish to become a garda or a teacher. That is codswallop. If a child is suffering from stress and does not want to go to school because learning the language is too much for them, then the exemption criteria should be widened.

The last point I wish to make is that there is a deficiency in ASD units in schools, particularly in secondary schools, and some schools are passing the buck. There are large towns in Ireland with populations of 25,000 to 35,000 people that have an ASD unit in a school that only has capacity for six children. I would not even attempt to break down the percentages of that but it comes up well short of what is required. Finally, I wish to echo the point made so eloquently by Senator Fitzpatrick. It is an issue which is close to my heart, although I will not bring personal experiences into it, but there is a real drop off in supports provided when a child reaches adolescence and becomes an adult. They are treated by the general mental health services and psychological support services and overall, there is a shortfall in respect of the support provided at this stage. There are many aspects to a child, teenager and an adult coping and grappling with special needs in their life. The intellectual aspect is just one part of it. A person could be physically or emotionally healthy or the imbalances could be calibrated in a different way but the State supports are not meeting the needs as the children move beyond childhood and adolescence and into adulthood.

I have said enough. I am here to support Dr. Muldoon, not to grill him and I have full faith in him. If there is an issue that needs to be tackled and highlighted by this committee, it is that people who are not qualified enough are striking out recommendations. I would not tell a plumber or a mechanic how to do their job. A SENO should not look at of a volume of reports that are pivotal to a child's life and strike out the recommendations others have made. It is wrong, and I ask that the issue is championed by Dr. Muldoon's office.

I ask Dr. Muldoon to respond. I know that some of the issues raised concern education, for example, I am not sure that Dr. Muldoon will be able to respond on the issue of the Irish-language exemption. I ask him to respond to the issues raised that he can.

Dr. Niall Muldoon

I appreciate Deputy Crowe's kind words. For me, the simple answer would be for the Oireachtas to push forward on the incorporation of the UNCRC. This would mean that if anyone who wanted to strike out recommendations made by a qualified professional would have to consider the best interests of the child and determine whether the rights of the child are still being supported without the recommendations that had been put forward. That is something that could be championed across the Oireachtas and it is how I hope this issue could be tackled.

Deputy Crowe mentioned schools and I have come across many high-quality schools, particularly at primary level, in relation to the assessment of needs, where often boards of management will fund private assessments for children and where the teachers and parents work together to make things happen. That is an example of Irish people finding a way to make things happen, despite the system, and it should not be this way. The gathering together of funds to make a private assessment, and then to find that the assessment is not necessarily accepted, regardless of the standing of the person who is writing the assessment, is a real step backwards.

I take the Deputy's point about how visible disabilities are more easily championed. Dyspraxia and dyscalculia are just as traumatic for children and young people and harder to find and diagnose.

Even having to think about being diagnosed in this regard can be difficult.

The physical aids and assistive technology have the same principle. If everybody in the system is making a decision based on the best interests of the child, it should be easy to follow the logic and pattern behind it. It comes from the system allowing it. It comes from legislation and parents having the right to sue or take up the statutory obligation to their child's rights. If we can provide a system such as this, it really will be supportive of the child in this regard. This is a real way of thinking about and believing in our children that would support them. Similarly, it would change the way they enter the adult services. If we have statutory obligations to follow the UN Convention on the Rights of the Child and put children's rights at the heart of our decision-making, there will be no way they should get as far as the age of 18 or 19 without knowing where they are moving to and what systems and services are in place for them at that stage because we will have set ourselves up as a society that really puts children at the heart of decision-making.

I want to raise several issues. As has been said, we genuinely appreciate Dr. Muldoon coming before the committee, the report and his work in general. I have always found a very proactive approach from the Office of the Ombudsman for Children. It is very much needed, unfortunately, because as I am sure many people will agree, a child with additional needs is almost a second-class citizen. It is acceptable to wait for a school place, and it is acceptable to have to wait for resource hours and, particularly in rural areas, for transport. Everything is a battle and parents say this. Then we have situations where some parents may be able to take on that battle but not every parent can. There is a small reference to this in the report. People may be able to make a complaint and an appeal but they get worn down by this. It seems it is paperwork after paperwork. We welcome the report, even though it is difficult reading in the sense that it is terrible to think that in 2020 this is where children with additional needs are. However, it needs to be highlighted and addressed. In this regard it is welcome.

I want to ask about the comment that Dr. Muldoon made earlier about HIQA. Did HIQA give a reason in the letter? Perhaps Dr. Muldoon cannot go into it, and I respect if he cannot do so, but it seems to be another example of second-class citizens whereby children with additional needs will not be considered immediately.

In his opening statement, Dr. Muldoon spoke about amending section 18 to expand the powers of the disability appeals officer to provide compensation as a remedy for breaches under the Act. Will we have to get to this stage before we see any real progress? At the end of the day, it is money. Unfortunately, it is when people have to pay out money that they sit up and pay attention. It should not have to get to that stage but it seems as though it will. I can think of so many people who could potentially fall into that category if it were the case. What does Dr. Muldoon think about this?

We all get many representations from parents who are heartbroken trying to get an assessment of needs, occupational therapy, speech and language therapy or ASD class places. It is overwhelming. I thank the members for their contributions today as they touched on many important points. I thought the point on housing was excellent as often we have a battle with local authorities on children with autism. There might not be a need for a wheelchair ramp but children need space. Perhaps they need their own room or a breakout room. I cannot think of the exact word.

Yes. I know there is a name but I cannot think of it. This is just as important and sometimes it is dismissed by local authorities. It is great that we have had the opportunity to raise these issues today. If Dr. Muldoon is able to do so, I ask him to answer my question on the HIQA letter. I believe we will have to get to a stage where there is financial compensation before we see changes and I would like Dr Muldoon's opinion on this.

Dr. Niall Muldoon

I thank the Chairman for hosting the meeting and guiding us. I will deal with the question on financial penalties and hand over to my colleague on HIQA. I struggled with putting the financial penalty into the recommendations because I felt it was such a draconian old-fashioned way of doing things, whereby we have to use a stick to get some sort of compliance in moving forward. However, if that is the way we have to do it, and we find we are paying penalties of X million euro every year instead of diverting those millions to making the system work, that is fine if it is what we need to do for a certain period of time but it is a shame that we even have to think that way. From our point of view we should be well past that. We should be progressive. We should be thinking about the future. We should be future-proofing these systems. There should be no question as to whether a child will get what he or she needs in the time set out in the legislative books. As I said previously, instead of spending money to fight parents who go to the High Court just to get an assessment of need in the time the law says it should take place, we should divert the money to creating resources and funding them. If the financial penalty works I will be delighted. It would be a shame if it does work but anything that moves things forward and makes it less intractable would be a positive. I will hand over to my colleague, Dr. McAuley, to discuss HIQA and give an outline on it.

Dr. Karen McAuley

With regard to the HIQA standards, our understanding is the principal reason that new standards will not be developed is primarily related to capacity and resources available to HIQA. It can speak for its own process but it has a prioritisation process to decide what types of new standards to develop and when to do so. Consideration was given to our suggestion that new standards be developed on assessments of need in the context of this process. One of the issues in this regard is that, as the Chairman is familiar with, there are existing standards since 2007 but there seems to be broad consensus that the standards are outdated, too generalised and not aligned with HIQA's current methodology for standards. In some cases, they are factually inaccurate. The difficulty we have is they are the only standards we have. Despite their flaws they are what we have got. They cannot be retired, as we understand it, until new standards are put in place. We are in a funny situation really and in a sense what it comes down to is the importance of standards. Standards are there to do various things but one very important thing they do is establish clarity on what is expected, whereby services know what they are expected to do and families, parents and children know what they are entitled to expect from services. It is a real problem that there will not be new standards developed allowing that the existing standards are widely regarded as deficient.

I thank the witnesses. That concludes our discussion, unless Dr. Muldoon wants to make closing remarks.

Dr. Niall Muldoon


I thank Dr. Muldoon and his colleagues, Dr. McAuley and Ms McKenna-Keane, for appearing before us via video link. I look forward to ongoing engagement with them. I propose that we publish the opening statement to the Oireachtas website. Is that agreed? Agreed.

The phrase I could not remember earlier was "sensory room".

The joint committee adjourned at 5.30 p.m. until 4 p.m. on Tuesday, 8 December 2020.