Maurice Quinlivan (Limerick City, Sinn Fein)
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Apologies have been received from Senator Bradley and Deputy Healy. The purpose of today's meeting is to continue pre-legislative scrutiny of the Disability (Amendment) Bill 2025. I welcome the witnesses. From the Ombudsman for Children's Office, we are joined by Dr. Niall Muldoon, Ombudsman for Children, Dr. Tricia Keilthy, director of policy, and Ms Nuala Ward, director of investigations. Joining us online from the centre for disability law and policy at the University of Galway are Professor Eilionóir Flynn, director, and Dr. Clíona de Bhailís, post-doctoral researcher. From the Psychological Society of Ireland, we have Dr. Sarah Cassidy, president, and Dr. Lauren Burns, council member and principal clinical psychologist.

As always, I will read the note on privilege and housekeeping matters. All witnesses are reminded of the long-standing parliamentary practice that they should not criticise or make charges against any person or entity by name or in such a way as to make him, her or it identifiable, or otherwise engage in speech that might be regarded as damaging to the good name of a person or entity. Therefore, if their statement is potentially defamatory in relation to the identifiable person or entity, they will be directed to discontinue their remarks by me. It is important they comply with any such direction. The evidence of witnesses physically present or who give evidence from within the parliamentary precincts is protected pursuant to both the Constitution and statute by absolute privilege.

I remind members of the constitutional requirement that in order to participate in public meetings, they must be physically present within the confines of the Leinster House complex. Members of the committee attending remotely must do so from within the precincts of Leinster House.

The committee welcomes the opportunity to engage with our witnesses on such an important issue. I thank them for accepting our invitation to attend in person or online in order to share their experiences and ideas. I remind all in attendance to make sure their mobile phones are either switched off or in silent mode.

I call the witnesses to make their opening statements.

Dr. Niall Muldoon:

I thank the Chair and the committee for inviting our office to provide our observations on the general scheme of the disability (amendment) Bill 2025. Our office was established in 2004 and is an independent statutory human rights body with two core functions: to promote and protect the rights and welfare of all children; and to examine and investigate complaints made by or on behalf of children about the administrative actions of public bodies.

Our office has long advocated for a child-centred, rights-based approach to disability law, grounded in a holistic and multidisciplinary understanding of children’s development and needs. 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 to fulfil their potential. Their rights to equality, non-discrimination, accessibility, effective participation and inclusion are further reinforced under the UN Convention on the Rights of Persons with Disabilities, UNCRPD.

In 2020, our office published Unmet Needs, a report on the challenges faced by children who require an assessment of their needs. Six years later, we reiterate many of the recommendations we made in that report. Daily we receive complaints from distraught parents whose children have spent years on a waiting list for an assessment of need. Many have found that, once their child is assessed, they struggle to get any or all of the services recommended to help their child talk, move, learn and grow. Change is urgently needed, and any reforms must ensure children’s timely access to services.

The general scheme introduces targeted amendments intended to clarify and streamline elements of the assessment of need, AON, process. The Disability Act 2005 provides for an assessment of the need for services, rather than an assessment of the child’s holistic health and development needs. In this context, we acknowledge that the general scheme is a shift in focus toward needs and away from overly resource-intensive diagnostic reporting, which is welcome. However, it does not address the broader structural reforms identified in our 2020 report. Specifically, the scheme does not: provide for the insertion of guiding principles to inform interpretation and implementation of the Disability Act 2005; amend the statutory definition of disability in section 2 to make it rights based and child centred; embed an explicit best interest, holistic and multidisciplinary approach to assessment under section 7; or strengthen enforcement mechanisms, including by expanding the remedial powers of the disability appeals officer under section 18. This is potentially a missed opportunity for rights alignment, statutory coherence and effective accountability within the framework of the 2005 Act. Legislative amendments designed to reduce burdens on resources must never be seen to erode children’s statutory rights, including the right to a comprehensive assessment process that can lawfully and effectively identify the child’s needs and the services required.

On the specific heads of the general scheme, head 3 introduces an initial determination of disability, prior to an assessment of need. The practical effect of this requires close scrutiny. In our view, a determination must involve a holistic appraisal of the child’s lived experience, including the barriers that impede participation and the supports that may remove them. The replacement of the word “disability” with “restriction” aligns with human rights approaches to disability but it sidelines the broader question of the definition of "disability" in law.

Head 4 proposes to postpone mandatory engagement with the education sector until after a disability determination is made. We are concerned that such a strict sequencing approach could lead to inconsistent access to educational expertise at the disability determination stage, where formal National Council for Special Education, NCSE, involvement, which may be necessary for the disability determination, could be deferred. This head also amends the assessment report to include "a statement of the significant difficulty in communication, learning or mobility or the significantly disordered cognitive processes ... which gives rise to the need for services", rather than a statement of the nature and extent of the disability. This is potentially one of the most consequential aspects of the general scheme. We are concerned this amendment may be perceived, and potentially used, as a legislative route to lowering the gold standard of statutory AON content.

This could happen in response to resource constraints, rather than as a child-centred, rights-based reform grounded in an inclusive, holistic needs assessment model.

Head 6 permits the Minister to require the HSE to issue guidelines providing practical guidance on the assessment process. We recognise that this has the potential to improve consistency and legal compliance nationally. However, guidelines cannot substitute for statutory rights, and they must have robust statutory underpinning and oversight. This head also enables the Minister to make regulations relating to the closure of applications. While there may be circumstances where it becomes impracticable to progress an application, any new closure power must include children’s rights safeguards, including clear notice requirements, child-appropriate and family-friendly communication and an appeals mechanism

Head 7 relates to transitional provisions. These can have significant practical effects for children who have been waiting long periods for assessment. It is essential that transitional arrangements are assessed through a child's rights lens. Further to these observations, we emphasise that reform of the 2005 Act cannot be considered in isolation from a wider review of the Disability Act, education legislation and other access pathways.

One of the major drivers of pressure on the AON system has been the non-commencement of core EPSEN Act provisions, which means families may rely on the AON process to access educational assessments and supports. In this respect, I draw the committee’s attention to our written submission, which provides an analysis of the Education for Persons with Special Educational Needs Act 2004 and the autism assessment and intervention pathway protocol.

We also believe a three-year review clause should be built into the Bill, and we recommend consideration be given to the views of children in the design of key policies and strategies affecting them. I thank the committee for its time and I look forward to the conversation.

Dr. Sarah Cassidy:

I thank the Cathaoirleach and members for the opportunity to address the committee today. I am speaking in my capacity as president of the Psychological Society of Ireland, PSI, the learned and professional body for psychology and psychologists in the Republic of Ireland.

As a profession that prioritises mental health care and well-being, we remain concerned with the waiting times and level of unmet need in children’s services from primary care, children’s disability network teams, CDNTs, children and adolescent mental health services, CAMHS, and assessment of need. The rapid rate of AON referrals reflects families’ experiences of having no other avenue to explore their concerns, as this pathway often provides a more timely and accurate assessment of a child’s needs than the service for which they are already waitlisted.

We recognise these unmet needs will not disappear simply because children grow older. Rather, they often become more complex and will follow children along their development and into adulthood and adult services. Proposed amendments to the Disability Act 2005 should reflect the Government’s commitment to progressing and delivering on promises made to address these concerns. A lifespan perspective needs to be taken to service provision and consideration given to unmet adult needs as well.

The Psychological Society of Ireland would like to respectfully highlight that this situation is not new. Many years of underfunding and under-resourcing of our teams has resulted in a situation where thousands of children and families are waiting years for assessment and support. We wish to emphasise to the committee that not meeting these needs can result in significant and lasting impacts for children, families and the clinicians working within these services who very much want to do their jobs well.

Repeated inefficiencies to address these needs is what has led to large numbers of families turning to the AON, as it is the only option that provides them with any legal entitlement. There is also a common perception among families that an AON is required to access services, when it is not, which further underscores the confusion and pressure faced by parents trying to navigate our systems.

The rapid rate of referrals to AON, along with limited resources to meet this need, was compounded by the introduction of the HSE’s preliminary team assessment, PTA, standard operating procedure. The PTAs commenced despite the clear evidence provided by multiple professional bodies that this plan was contrary to best practice and against the recommendation of committees of the Oireachtas. PTAs came at a significant cost to children and families, created time delays for assessment, diagnosis and intervention and created enormous and entirely avoidable financial expenditure to both services and the State.

Any measures introduced to address demand for assessment of need must not dilute the statutory right to a comprehensive assessment of needs arising from a disability, as assessment remains essential for identifying disability and clarifying the most appropriate supports. At the same time, an AON should neither function as a key to services nor as a barrier to access. Children should receive appropriate supports based on identified need and reforms must avoid reinforcing perceptions that legal assessment is the only route to State supports and services, particularly where this diverts valuable clinical resources away from intervention.

The PSI is committed to supporting policy and service development and remains open to consultation and partnership to ensure that all developments and reforms are evidence informed, person-centred and effectively implemented nationally. At present, the PSI continues to consult with the HSE around the autism assessment and intervention protocol and we welcome initiatives that increase efficiencies and capacity across services. We remain committed to evidence informed practice guiding all service change.

Consulting with psychologists delivering services and other professional bodies, as well as representative groups and communities with lived experience, is essential to ensure that system changes enhance access without compromising the quality or appropriateness of placements and that programmes must genuinely improve quality of life. Timely access to services and supports is critical for children, adolescents and families with evidence showing that early intervention reduces future support needs, while delaying support only exacerbates existing difficulties and simply moves the need from one child service to another and eventually over to adult services. In short, if children receive the right assessment at the right time in the right service, this will dramatically reduce the requirement to turn to a legal process such as AON. This will save the State money and will improve services and long-term outcomes for our communities.

We understand we are facing a complex problem and we do not wish to offer overly simplistic solutions or to minimise societal distress. Rather, we aim to offer our learned opinions in the spirit of supporting our own communities. The challenges facing children services are significant but they are not insurmountable.

Maurice Quinlivan (Limerick City, Sinn Fein)
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Dr. Cassidy, you are running over time.

Dr. Sarah Cassidy:

Okay.

We will build a system that delivers high-quality, equitable supports for all children, but we must act quickly because our children’s service issues are quickly becoming adult service issues. We cannot be silent or complicit when we have so much wisdom in front of us.

The Psychological Society of Ireland looks forward to working with this committee and all stakeholders to ensure children’s rights and lifespan quality of life across disability and other services continue to be highlighted while we maintain modern evidence informed practice as central for policy decisions being made.

Professor Eilionóir Flynn:

I thank the Chair and the committee for the invitation to today's session.

At the Centre for Disability Law and Policy, CDLP, we very much appreciate the opportunity to address the joint committee as part of this pre-legislative scrutiny. We are going to focus our opening statement primarily on the scheme’s compliance with Ireland’s obligations under the UN Convention on the Rights of Persons with Disabilities, the CRPD, specifically heads 3, 4 and 6.

We are concerned because the proposed amendments do not bring the Disability Act into closer alignment with the CRPD. Rather than clarifying the distinction between impairment and disability as conceptualised in Article 1 of the CRPD, head 3 continues to frame the substantial restrictions experienced by disabled people as occurring because of their impairments.

The Department has claimed that the amendment in head 3 is in keeping with Article 1 of the UNCRPD but this is not the case. Article 1 recognises that it is the interaction between people with impairments and various barriers in society that hinders their participation and results in disability. Head 3, subhead 2 does not include any references to the existence of barriers in society. Instead, it maintains that the substantial restrictions are experienced by reason of the person’s impairment. If the Department wishes to achieve compliance with Article 1 of the UNCRPD, more far-reaching amendments are required to the definition of "disability" in the original 2005 Act. At present, the scheme does not expand the definition of "need" to be more holistic, as recommended by the UN Committee on the Rights of the Child and in line with the UNCRPD. Furthermore, it does not amend the definition of "disability" to include restrictions in participation in education; rather it only recognises restrictions in participation in employment, social and cultural life.

We are deeply concerned that the general scheme proposes to amend the AON to determine the presence or absence of disability as a preliminary step in the process as per head 4, subhead 2. We fundamentally oppose this approach, which is not compliant with Ireland’s human rights obligations towards disabled people. The proposed amendment does not bring the Act into closer compliance with the UNCRPD because it reaffirms that substantial restrictions are being experienced by reason of impairment.

We disagree with the proposal in head 6 that would empower the HSE to develop guidelines on the interpretation of legal definitions in the Disability Act. The interpretation of legal definitions in the Act is a matter for the courts, and it is not appropriate to devolve this power to the HSE. This is especially the case given that the HSE is administering the AON process as it has a vested interest in the process. It is not independent of it. If any guidelines are to be developed for the application of the Act in practice, an entirely different process would be required to meet human rights obligations. If any legislative amendments are made to allow for the development of such guidelines, the process of their development must, at a minimum, guarantee meaningful and effective participation of disabled people and their representative organisations as equal partners in the process.

As a whole, therefore, the general scheme does not meaningfully address the support needs of disabled people who are currently seeking an AON. The general scheme does not propose to amend the Disability Act to recognise a legally binding right to concrete services and supports for disabled people as an outcome of the AON process. To bring the Disability Act into compliance with the convention, especially Article 19, amendments are required to recognise disabled people’s legal entitlements to support to enable them to live independently and be included in their communities. At present, the Act and the proposed amendment Bill only recognise an individual right to an assessment of need, with no legal guarantee that the services and supports identified to meet those needs will actually be provided and no legal consequences for the State where it fails to meet those needs in a timely manner.

The CDLP has recently completed research for the Irish Human Rights and Equality Commission on the Disability Act’s compliance with the UN convention. We identified a number of shortcomings which would need to be addressed in future amendments of the Act. Unfortunately, those amendments are not among those proposed by the Department in the general scheme at this point. However, to support the committee to develop its final report on this important amendment Bill, we would be happy to provide further information, including our comparative analysis of similar laws in other countries and potential options for further reform of the Disability Act to bring it into meaningful compliance with the UNCRPD

Maurice Quinlivan (Limerick City, Sinn Fein)
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I thank Professor Flynn. I now invite members of the committee to put their questions. As they know, they should adhere to the agenda item for discussion.

Gillian Toole (Meath East, Independent)
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I thank the witnesses for meeting us this morning. I also thank the secretariat. I thank all the witnesses also for the comprehensive information they provided. They might be glad to hear, or perhaps not, that on foot of the information and the briefings last night and this morning, I propose to use my time to ask the witnesses to elaborate further. I had questions about what guidelines might look like. The Ombudsman for Children's Office has kindly elaborated on that in the appendix to its document. Professor Flynn made reference to best practice in other countries so she might elaborate on that. Members may like to use the remaining time to come in and out as they see fit. At this point, the witnesses' recommendations are clear. They include the rights base, adequate resourcing, the voice of the child, the review process and strengthening and having very clear guidelines. There should be no grey areas. The whole process should be strengthened as we move through it. I will hand over to whoever wishes to come in.

Professor Eilionóir Flynn:

I am happy to talk about the approaches in other countries if that would be helpful, unless anyone else wants to start.

Maurice Quinlivan (Limerick City, Sinn Fein)
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Go ahead.

Professor Eilionóir Flynn:

For our research, the other two European countries we looked at were Iceland and Portugal. The reason we chose those countries is that a large part of their disability Acts focuses on services and supports for disabled people. In other countries, the disability Acts are often much broader and do things more like what we have in our Equal Status Acts and Employment Equality Acts, which prohibit discrimination on the grounds of disability. That is less relevant to the specific form of Disability Act we have in Ireland. That is why we selected Iceland and Portugal.

While neither country is in perfect compliance with the UN convention's requirements, we found that both countries had interesting approaches. For example, in Portugal, the disability Act was developed, like ours, prior to the existence of the UN convention, but it has been constantly updated since Portugal ratified the convention to bring it into closer alignment with the convention. It sets out a number of state obligations to support disabled people and provide services to them in a range of areas, and talks about the need to ensure the state is fulfilling its duties and obligations to disabled people. Rather than framing the right as an individual right of a disabled person to access a particular service, the Portuguese Act frames it as an obligation of the state to provide the service to all disabled people who may need it. It also specifies the manner and organisation for those services to exist. Therefore, with respect to such things as independent living, for example, Portuguese law has been amended over time to change the focus from providing group-based congregated settings to supporting people to live independently in their communities with the support they require to participate in society. It talks about staffing levels to support people in their lives in the community and outlines how the state can fulfil those obligations. That Act has been supplemented by a number of regulations that have followed it which provide more a detailed explanation of how the state will achieve these goals and the resourcing of the various supports, which is missing from our context. That is one example.

In the Icelandic system, there is an example of an Act developed following the entry into force of the convention and Iceland's ratification of it. There, the focus is on municipalities. Local municipalities are the primary source of services and supports for disabled people and disabled people have an entitlement to create an agreement with their municipality on their support needs. Different options are given for people to receive support, such as through a personal assistant, a personal budget that the individual controls, or the provision of comprehensive support to people and their families to manage a budget allocated to them to meet their support needs.

There are also plenty of examples in other countries we could rely on to completely restructure and redesign the process to determine what supports disabled people need and how they will receive them. Right now, the AON process, unfortunately, does not guarantee people any services and supports, even at the end of this quite arduous process. We need an overhaul of our entire thinking around AON if we are to meet the requirements of the UN convention and the real-life support needs of disabled people.

Dr. Tricia Keilthy:

We have outlined a number of safeguards we would like to see in place in relation to the guidelines. The first is that they should expressly confirm they cannot narrow statutory rights so the legal status of children's rights in the AON process is clear. The second point is that we want them to be developed with meaningful consultation with disabled people, organisations, children and families and we want them to be published in an accessible format for children and families.

Key to that is effective oversight and enforcement of the guidelines. As Dr. Muldoon outlined in the opening statement, it is really important that we build in a review period of three to five years to see how this is working and that we include children, families and disabled persons in that review process.

Gillian Toole (Meath East, Independent)
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I thank Dr. Keilthy. It is very comprehensive information. As I go through a third and fourth read, I will follow up.

Margaret Murphy O'Mahony (Fianna Fail)
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I welcome all of the witnesses here today, whether in person or online. I thank all of them for the excellent information that they sent in previously. A lot of work went into it. I also thank them all for the great work that they do.

I will start with the Ombudsman for Children's office. The office argued that the definition should be rights based and child centred, which is a great idea. In Dr. Muldoon's opinion, how should the Bill's definition be amended to reflect an holistic understanding of children's development and lived experience?

Dr. Niall Muldoon:

From our point of view, we need to take the lead from the UNCRPD and start looking at the impairment and the impact that society has on that. Professor Flynn has talked a bit about that as well. That is where we need to match those pieces of legislation with one another so that we are not creating a new definition. We need to acknowledge, given the ratification of the UNCRPD, that we use that definition. The preamble of the UNCRPD - I cannot remember the exact section - contains a definition that we would recommend. It is the socially acceptable way. We recognise that society is what is causing the impairment, so society needs to adjust to meet the needs of all these children and adults with disabilities. That is the sort of definition that becomes child centred and rights based so that it is on us and in our control. It should also be our obligation to make sure that the world fits for these children and gives them every opportunity. That is the definition we would look at following through on.

Dr. Tricia Keilthy:

It arises from the fact that there are different definitions of disability across different pieces of legislation. The UN Committee on the Rights of the Child has recommended that Ireland review all of its legislation, including the Disability Act, the Equality Acts and the Education for Persons with Special Educational Needs, EPSEN, Act, to ensure a child's rights-centred approach. A lot of the definitions are adult-centred in terms of how they are operationalised and set out in legislation.

Dr. Niall Muldoon:

As we know, when you set it out with an adult focus, you will have different needs, different set-ups and different resources. We need to make sure that that does not happen and that we be very clear that when the guidelines come out, they are child centred and specific for our children so that they work. If we get them right for the children, the adult world becomes easier as well.

Margaret Murphy O'Mahony (Fianna Fail)
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My next question is for the ladies online. Professor Flynn noted that the proposed definition continued to attribute restrictions by reason of impairment and ignored societal barriers. What legislative wording would Professor Flynn recommend to ensure full alignment with Article 1 of the UNCRPD?

Professor Eilionóir Flynn:

From our perspective, we could simply use the exact wording in Article 1. That would be the most human rights focused. I can imagine that there would be some difficulties in getting agreement on that because the conceptualisation of disability in Article 1 of the convention is relatively open-ended. It says that persons with disabilities "include" and then gives some examples, but it is not an exhaustive list.

In terms of planning for resources and entitlements, I can imagine that there would be some resistance to adopting an open-ended conceptualisation of disability, but that is the most human rights-focused and human rights-compliant approach to disability.

As we mentioned in our opening statement, it is also important to recognise in the definition of disability in the Disability Act the barriers in society. Right now, we recognise the restrictions that disabled people face but we attribute those distinctions to the impairment and not the barriers in society. At a very minimum, that recognition would need to be included in the definition of disability in the Disability Act and it would need to be extended to a whole range of ways of participating in society, including education, which is currently missing from the definition. We can say that that might be because at the time the Disability Act was drafted, it was assumed that the EPSEN Act would be fully commenced and all of the assessments for educational need and support would be done under that law. In our view, though, it is problematic to require disabled children, and disabled adults who may be in further education, to go through two different assessment processes - one for education and one for everything else. It would be much more human rights compliant to have a singular process to identify the supports disabled people are entitled to and ensure they receive them.

Margaret Murphy O'Mahony (Fianna Fail)
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I thank the professor. The PSI emphasised that many families wrongly believed that the assessment of need was required to access supports. I see that every day. People think it is a passport to services, which it can be, but it is obviously not a necessary one. What practical reforms of public-facing communications would the PSI recommend to stop this and for people to know exactly what the AON is?

Dr. Sarah Cassidy:

There is a huge piece that needs to be done about the communication with families. The information we have received from our members is that that is across the board and services. We are looking at the AON and these legislative amendments as one discrete piece of work, but the mistake we are making is that families are not coming for that. They are coming to access services and supports for their children and their children need those supports. Families that are coming are not clinicians or legislators. There might be a public health campaign or communication at point of access. It could be a multipronged approach.

One thing we repeatedly get wrong is that when a family comes for services and supports, instead of letting them know we are there to provide services and supports and fulfil their rights, we say they have come to the wrong place and we cannot help them. It is a mistake to do that and increases the depth of the distress that many children and families are facing.

We have a lot of solutions and communication is key. There are a wide array of other pieces and I am happy to expand upon those but the Senator has landed on a really important one in communication. We see that every single day. Families approach and ask us, whether in public or private practice, whether we can do an assessment of need, but not every person needs that. Sometimes, what a family needs is access to education or an understanding of their identity or diagnosis. Unfortunately, this fundamental misunderstanding of what the AON is for drives a huge cost and burden that is totally unnecessary.

Margaret Murphy O'Mahony (Fianna Fail)
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Families are so vulnerable when they go looking for help.

Dr. Sarah Cassidy:

They are.

Margaret Murphy O'Mahony (Fianna Fail)
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It does not help that there is a misconception. When they come to the stage where they are looking to help, there have already been a lot of hurdles jumped and there is a lot of emotion.

Dr. Sarah Cassidy:

They do not want to be corrected.

Margaret Murphy O'Mahony (Fianna Fail)
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No. That does not help.

Tom Clonan (Independent)
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I will first apologise. I am on the health committee and we are discussing the CAMHS issue, so I will have to go back in there immediately after this. If any of my observations or questions have already been addressed, I apologise in advance.

I thank all of the witnesses for being there. I want to put it on the record that, through the work the Ombudsman's office does, it is a very powerful voice in advocating for all of our children, particularly for disabled children. I really notice that in our public discourse and it is very much appreciated. Similarly with the PSI, I have participated in a number of its events where it has focused in on the intersectionality of disability and mental health issues. To my great colleagues in Galway, Dr. de Bhailís and Professor Flynn, I am aware of their work and research. It is such an important part of advocacy and the infrastructure of advocacy that we so badly need in this jurisdiction because I believe we are outliers.

On the pre-legislative scrutiny, I have two questions. It is proposed in the pre-legislative scrutiny that there would be an administrative officer who would decide what services or supports you might require.

As in our case as a family, you will see many paediatric consultants in cardiology, in urology, general paediatrics and gate assessments. There is such a huge medical intervention. The social contract between yourself and your doctor and all the clinicians and allied health professionals is such an intimate one. You have people with higher specialist training and years of experience making decisions, and it was clarified at a previous meeting that these files then would be passed on to a grade VII administrator. It is unfair to put an administrator into that position to triage our disabled citizens and I am curious to know what the witnesses think of this kind of triage by a bureaucrat or some kind of administrative process in terms of the child-centred right focus.

In the run-up to the general election, it was great to see all parties foreground disability rights as part of their election manifestos. Notwithstanding that and the failure of the care referendum, which had a wording that would deny disabled citizens socioeconomic rights for which it got specific advice from the Attorney General, we see step after step being taken by the Government - it is reflected in this proposed legislation - to row back on the rights of disabled citizens. The only right that we have as disabled citizens is a right to an assessment of need and they want to dilute that or remove it. Why is that the case? What is it about Irish policy, public discourse and culture that wants to push back on the rights of those with disabilities? They know it is wrong to be sexist. They know it is wrong to be racist. I believe sexism and gender-based violence are profound and persistent issues but they know they are not supposed to be, they know they are not supposed to discriminate on the basis of religious belief but when it comes to disability, they are explicitly ableist. They seem to want to pursue that agenda. Why might that be the case?

Ms Nuala Ward:

The Senator is absolutely right. We see it every day in the complaints that we are getting. It is about a failure to respect the rights of individual children and families in terms of accessing the services that they need to have equal participation in society.

As to the underlying reason why, that is difficult. All we want to do today is to push for exactly what the Senator is talking about, which is a holistic child-centred approach that would meet the needs of the children and the families in order that they can stay at home, grow up and participate fully in society.

The issue the Senator raises about administration officers carrying out decisions is an interesting one. What we have raised in our submission today is the need for the statutory guidance, but the statutory guidance that is set out today must fit under the HIQA standards that seem to be not recognised so far. HIQA has a specific role. It did an excellent paper last year on the needs for standards of assessment of needs and that is where the basis should be because there is no question that they will be rights based. Underneath that, a statutory guidance should be sought. That is how things should be sequenced. We believe that would be very important.

The core piece, though, is to move away from medical. While there are children with profound and serious disability needs who absolutely have specialised and supportive clinical and medical needs, that is only a small part of who they are. That is why we really want to push repeatedly for a holistic needs-led approach.

Dr. Niall Muldoon:

If I might comment on the concept of the State being explicitly ableist, from my point of view of consistently looking for this, you can see from our Unmet Needs report of six years ago that we were asking for a lot of this stuff to be changed and to have a review of Education for Persons with Special Educational Needs, EPSEN, Act 2004. We could have done it. Six years would have been plenty of time to do EPSEN, the Equality Act and the Disability Act together, which is what we asked for.

It comes down to money at times. The more people are defined as disabled, the more the costs go. There is the carer's allowance, etc. There are elements there that are a real consideration and which take priority over the child at times. That may be unfair to the State but that is the way it is starting to look. We have heard from Professor Flynn that if we move in the right direction, which is putting the child at the centre and recognising the State has an obligation to every child to provide every service to him or her in the way that the child deserves to reach his or her potential, then we move in a different model. That is what we need to get to. That why we ratified the CRPD. That is why we ratified the UN Convention on the Rights of the Child. It is why we are pushing to get the UN Convention on the Rights of the Child into legislation in Ireland so that, at every decision-making point, from the very first concept of pre-legislation to designing the legislation and designing White Papers, you think about the child and the impact on the child immediately so that those things are built into our system and then the funding comes with that. We all know that if you get the funding right early, it saves twice or three times as much later on. That is my input on that.

Professor Eilionóir Flynn:

To add to what Dr. Muldoon has said, it is really important that any process to determine what supports disabled people require should recognise that disabled people are the experts on what they need and those who know them well will have a good sense of how those supports could be organised or provided. That main form of expertise is what needs to be prioritised in the process. Not to undermine any medical expertise or other kinds of professional expertise that are welcome and can be drawn upon by disabled people, the process needs to centre on believing disabled people when they say that this is something they need and this is something that will support them, rather than challenging them and requiring them to prove it in ways that are very burdensome for the disabled person and for families and those supporting the disabled person. That really needs to be restructured radically to achieve that.

I agree as well that the costs and resourcing issue is very much at the heart of changes that were being made and, indeed, was very much in the conversation when the Disability Act was first being drafted. The main concern of the Government at the time was to ensure that there would be no justiciable rights to end product services for disabled people because of the concerns about cost. As we are recognising more forms of disability and recognising more disabled people are becoming diagnosed in adulthood, etc., there is an increasing cost attached, but there is also a cost to society of ignoring this level of support that people are asking for. The latter cost should be factored in to the cost-benefit analysis when we understand what the State is paying to engage in a very laborious assessment process when, in fact, if the State simply gave the support to everyone who asked for it and invested the resources in providing the support rather than in doing the assessment process, that would be a much more human-rights compatible approach and it would be a much more effective use of State resources. Of course, that is a challenge.

Tom Clonan (Independent)
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I thank the witnesses. Apologies, but I have to leave.

Ruairí Ó Murchú (Louth, Sinn Fein)
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Cuirim fáilte rompu go léir. A number of the witnesses have spoken about the fact that what we want or need to see is disability rights enshrined and almost that we have checks and balances from a legislative point of view that ensure the delivery of rights of citizens. On some level, this is starting from a bad place. You are starting with a failure of families and disabled people getting those requirements that they need, particularly in anything from that world of assessments to therapies.

The big reason we are doing this is that the waiting lists for AONs is 22,200 at the last call. There is a means, obviously, of moving people onto other lists. I also accept, as a parent, as anyone else would, that if my child was getting what I needed I probably would not particularly care about the ins and outs of all of this. As much as this started in a bad place and as much as this is not the way you would like to see it done in relation to engagement with stakeholders and those with disabilities, I suppose it is a matter of how do we best shape this to work.

I would also say, about AONs, that people end up in that place. It is not like they telephone primary care or get talking to somebody in a children's disability network team, CDNT, who says that they can sort you out with a therapeutic process and can get them sorted, and seeing that issue that their child has at school in relation to emotion regulation, that they will get around that and not to worry about the AON. I am fairly sure many people would take that.

Schools require AONs at times. People have required to go down this road. It is the only road in town. A single point of access makes complete sense but I suppose it is a question of a working system. We can talk in generalities and how it would be great if we had multidisciplinary teams that were absolutely resourced but we do not have that at the minute. Therefore, it is going to be incredibly difficult. What is the best we can do?

What do we need to ensure this legislation works so that it does not create a bigger issue?

Dr. Sarah Cassidy:

There are a few different things here and we need to be careful that we are not conflating one thing with another. It might be that we are working on two-----

Ruairí Ó Murchú (Louth, Sinn Fein)
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If we were starting again, we would not set it up with the AON process.

Dr. Sarah Cassidy:

No.

Ruairí Ó Murchú (Louth, Sinn Fein)
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We would not set it up with CDNTs. We would not have taken therapies out of schools and, for the most part, we would have done it where the need is to allow for earlier, easier and cheaper interventions. The more bespoke acute care could also then be done by an alternative or an overlapping service and we would not have the silo scenarios in relation to school therapies, assessments, etc. I will not interrupt again.

Dr. Sarah Cassidy:

It is okay. There is no body of research that suggests wait and see works. We know children need disability assessments. There can be some confusion. What we are looking at with this Bill is whether a child meets the criteria for disability under this Bill. The danger here relates to the actual purpose of assessment under this Bill. Is it whether somebody has met the threshold under AON? They may or may not have met the criteria for disability under this Bill and that may or may not be effectively communicated to a family. Some of the things that we were considering was whether this was appropriate because there are always going to be some individuals who may have a diagnosis and who may have a disability, but that may not be a disability that is so impairing that it precludes them from taking part in society, education-----

Ruairí Ó Murchú (Louth, Sinn Fein)
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We might also have the reverse where somebody does not fit the criteria but requires speech and language therapy or occupational therapy.

Dr. Sarah Cassidy:

Absolutely.

Ruairí Ó Murchú (Louth, Sinn Fein)
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The promise is that this will happen, but it is about making sure that is enshrined, and I lied about not interrupting.

Dr. Sarah Cassidy:

Absolutely and that is why this is a unique challenge. Some of our colleagues have mentioned we cannot have a situation where this is sort of a "one and done" scenario and we never see this individual again. There may a certain cohort of children - it is estimated that number might be 20% - that does not meet the criteria for a disability under this Bill. What we do not know at this point is whether those individuals who do not have a disability simply do not meet the criteria at this point in time. Do they need the services of the State? Do they need a service statement at this time?

Ruairí Ó Murchú (Louth, Sinn Fein)
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We need to ensure a right to therapies, even if someone technically does not meet the criteria, for example, if 29% fall into not having a disability.

Dr. Sarah Cassidy:

There are some really good things that we can do. If the purpose here is to increase efficiencies, everybody applauds that, and we absolutely need that. Right now, we are wasting an extraordinary amount of money-----

Ruairí Ó Murchú (Louth, Sinn Fein)
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And time.

Dr. Sarah Cassidy:

-----but we have to put funding into workforce planning, recruitment and retention because there is no point in directing people to a different service and suppor, if we have not done the workforce planning. We have children with disabilities who have increasingly complex needs, so we have to have adequate resourcing anyway and we have to integrate services through the single point of access.

We also have to protect the statutory right to assessment. This is a really important point because in line with the UNCRPD, if we are protecting a statutory right to assessment and, again, that does not mean that everybody must have one. Everybody might not need to come in under AON, but there has to be a statutory right to an assessment because that is how we determine the nature and extent of a disability. If it is the case that somebody who is perhaps not a clinician is determining that somebody does not have a disability before they have access to comprehensive assessment, then we may be ruling them out of their fundamental human right. That is a real risk.

The other piece is that we may not be upholding professional standards, so we could be in murky territory. We need to make sure that we do both pieces. Of course, we have to increase efficiencies because there is harm being done just by the very fact that people are waiting on waiting lists and nobody wants that, but we also have to ensure that people are still protected.

Ruairí Ó Murchú (Louth, Sinn Fein)
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It is just a point of information. The promise was regarding what the Minister said. We had the issue with the assessment officers' clinical backgrounds. The Minister said that it was with the HSE at the minute, and it was ensuring that there was a cover of skillsets and that the clinical back-up will be there. I do not know what that looks like, but I am just throwing it out there.

Liam Quaide (Cork East, Social Democrats)
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I thank the Chair and I thank all the witnesses for being here and for sharing their knowledge and expertise, which is really valuable to us. I want to ask a similar question to the one I asked the representatives from St. Gabriel's and Enable Ireland at last night's session. If we had proper resourcing of and integrated working between all of our child and adolescent services, primary care, CDNTs and CAMHS, as well a single point of access in operation and clear benchmarks for primary care, in particular, and a comprehensive recruitment drive there because that is the service that is most in need at the moment, and if we phased out the private outsourcing of assessments of need and instead redirected that €20 million for this year into recruiting permanent staff in the public sector taking away the perverse incentives for many clinicians who are now, as I understand it, leaving the public sector to avail of quite lucrative private work, would we still need reform of the assessment of need? This just seems like cover for service development failure and it is moving the problem around and addressing it in a very narrow manner. Do the witnesses think there is still a need to change eligibility around assessment of need?

Ms Lauren Burns:

The Deputy is dead right. If a child gets the right assessment at the right time in the right service, that completely negates the need for an assessment of need. For so long, parents have been misinformed that an assessment of need is a requirement to access anything. Thankfully, that has never been the case.

We would always suggest that if somebody recommends an assessment of need for a child, they also recommend an appropriate service to follow that on. At the end of it, AON will recommend a service, but if a child is on that waiting list, parents can avail of wait-list initiatives, psychoeducation and all of that will work to mitigate some of the difficulties that might be going on for that child.

If we can support clinicians with appropriate staffing levels and standard operating procedures to allow them to do what is needed for that child at that time rather than sending them to a different waiting list to get a need identified when, more often than not, clinicians know what that need is, they may not be constrained within their own service to be allowed identify that need via assessment and then plan for appropriate intervention.

AON has often become a service crisis point for parents because they were maybe directed there as a first port of call as opposed to a CDNT or primary care where needs can be met and supported. As Deputy Ó Murchú said, once families get what they need - be it the assessment, the understanding of their child and the appropriate service - AON becomes secondary. It is like a back-up if they are on that list, but once their needs are known and met in an appropriate way that is what is needed - and obviously we have to look at education that dovetails therapeutic supports. As Professor Flynn said, it is about the need, not necessarily the identification of a legal process.

Liam Quaide (Cork East, Social Democrats)
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Is this then a huge misdirection of focus on the Government's part? What we actually need is workforce planning, service development and the integration of the services. Even in primary care, the mental health and disability services are not able to work in a multidisciplinary way at the moment because they are just in crisis mode. CAMHS is, at least, attempting multidisciplinary care and CDNTs, but primary carers are working in silos and in hollowed-out services. It was quite an appealing place to work when I was coming of age as a psychologist. It is now a place where there is a bit of an exodus. Managers are finding it harder to recruit staff because it is a self-fulfilling prophecy or a feedback loop. When a service is so depleted, it cannot retain staff or draw new staff in.

In the lead-up to this Bill, the Government has been emphasising very lengthy AONs. Last May, the Minister, Deputy Foley, said that some assessments of need are taking up to 90 hours. She said this was "ridiculous" and was one of the reasons we need reform of the assessment of need process.

The Taoiseach has made similar claims repeatedly in the Chamber. He has talked about how excessive resources are being caught up in assessments that should be deployed to therapies. What is the witnesses’ understanding of the amount of time involved in carrying out assessments of need? Is there any truth to the Government’s narrative? If there is truth to it, does it make a case for reform in some way? What are the clinical reasons behind an assessment of need taking many hours?

Ms Lauren Burns:

Sometimes, the needs can be quite apparent and the assessment may not take that long. Sometimes, however, the needs may not be so apparent and the assessment might take longer. When we outsource to private capacities, we are in danger of, perhaps, unnecessary assessments being completed. I use the example of a child for whom there are no concerns around speech and language but yet a full speech and language assessment is being completed. The clinical hours associated with that, between doing the assessment, writing it up and feeding back to parents, could be five or six hours. When we multiply that by a certain number of clinicians over a specific time, we can see how quickly that timescale can build up.

If we support children where they are at and only complete the amount of assessment that is necessary to identify the needs, as outlined by HIQA, then we can streamline the process, which is always a good idea. I am never an advocate for over-assessing a child just to tick a box. That is important. Often, with the assessment of need process, or any assessment process, we tend to forget the impact on the child from being the subject of an assessment and the anxiety and dysregulation it can create. Often, we may not need a formal assessment to identify needs. Change, such as the autism assessment protocol, etc., is coming down the line. That can only be supportive.

Liam Quaide (Cork East, Social Democrats)
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Are these lengthy assessments seen more often in the private sphere?

Dr. Sarah Cassidy:

While we cannot speak for all assessments, an assessment of 90 hours is an outlier. That is not a typical assessment. Of course, there may be instances where children have quite a lot of complexity. In those instances, it is certainly possible for an assessment to be that lengthy. In my experience, however, it is quite rare.

Maurice Quinlivan (Limerick City, Sinn Fein)
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Does Professor Flynn wish to come in?

Professor Eilionóir Flynn:

It was to discuss a previous point but I will let this continue.

Dr. Sarah Cassidy:

It is an outlier. We need to be conscious of that. Maybe we should look at average times rather than the outliers.

Gillian Toole (Meath East, Independent)
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I will follow on from Deputy Quaide’s question about when we will achieve adequate workforce planning. I refer to people being retained, terms and conditions improving or changing accordingly and services being provided to meet the needs of children. Is it still prudent to go on this pathway of comprehensive reform? Should we deal solely with the assessment of need process in Part 2 of the Act, or should we look at the Act in total? I know I am straying a bit here. There is also a recommendation, which goes back to 2020 or 2022, that the Education for Persons with Special Educational Needs Act 2004 should be looked at. The witnesses do not want to be coming in here in five years’ time and we are still at this process. How do we best move towards this?

My second question, if time allows, relates to the autism assessment and intervention pathway and ensuring its relationship with the legal rights framework. It was mentioned that this requires careful scrutiny. Will Dr. Muldoon elaborate on what “careful scrutiny” means? Similar to the situation where a child is determined to either have a disability or not and is then put along a specific pathway, my fear is that an autism assessment will be considered completed, despite the fact that there is a possible co-condition in approximately 50% of cases.

Dr. Niall Muldoon:

I love the concept of primary care centres, CAMHS units, CDNTs and all of those areas being fully stocked, staffed and resourced. That would be fantastic. We must place the responsibility clearly in this regard. When we wrote our report in 2020, we were seriously concerned and thought it an urgent crisis when 6,000 children were waiting at that stage. That is only six years ago. The HSE continued to go ahead with a standard operating procedure, SOP, that every single professional body - witnesses from the Psychological Society of Ireland talked about this - said would not work because it did not fit the standards and was unfair and inappropriate. That was turned down twice by the High Court. This is what brings us to the now 22,000 children on the waiting list because we had to go back and restart everything. The HSE knew this but it bolted ahead at a time when it should not have. Now is the time to listen. We are tinkering around the edges again. We need to listen to the people who work and are involved in disability, including those who have lived with and experienced disability and know the legislation. Now is the time. If we are going to change, let us change for the right reasons in the right direction. That is why we must look at all the legislation out there.

The assessment of need process is one thing. It is an important piece to get right. We need to know we are going to get it right and children will be provided with the service they need. Good workforce planning should all come from that. While the idea that there would not be an assessment of need is fantastic, as our colleagues have said, it is a statutory right. It is the only statutory right at this moment for a child with a disability to get in place.

There is an old saying that the State seems to forget so often - if you make a promise, you create hope. The parents with whom we deal are living with hope all the time. There is a promise of an assessment of need that they hope will lead to a service. If that promise is fulfilled, then trust is created. The services have continuously failed to create the trust because they are not able to provide the services. The assessment of need is only the step. It is only the promise. Creating the service is where the trust comes from. That is where we need to get to. The plans at the moment look to us like an attempt to spend fewer resources in this area. They are tinkering around the edges. If we acknowledge that we are going to do this right and children and people with disabilities will be at the centre of it, it may lead to a short increase in resource spending but it will lead to much better services later and an increase in trust.

When we talk about communications and parents thinking everything needs to go through the assessment of need process, that comes from them being on forums. All they hear is that they need to go through the assessment of need process. If parents start going on forums where half the people have already received a service they trust, that communication will soon snowball in a good direction. That sort of thinking needs to be brought in. It is about that bigger thinking rather than simply tinkering around the edges. The idea of challenging 90 hours for being too much or five hours for being too little is not relevant. Rather, it is about what the child needs and ensuring we provide those services. We need to do it in a proper way. The assessment of need being carried out by an assessment officer without input from clinical people is a tricky, slippery slope I am concerned about.

Ms Lauren Burns:

I support what the Ombudsman for Children has said. It is essential to resource the supports people need. If we did that and invested the resources, the waiting list for an assessment of need would disappear if people were getting what they wanted.

There is still a need to reform the Disability Act as a whole, rather than the assessment of need process alone, because of Ireland’s obligations having ratified the UNCRPD. It is essential that we look at the big picture in this regard. Making these small tweaks to an assessment process, possibly out of concern for resources and trying to cut costs, is not human rights compliant. We have a lot of gaps in human rights compliance in all of the sections of the Disability Act, not solely in Part 2 of the Act on assessments of need. Those gaps need to be addressed regardless. I still see the need for that bigger picture reform as part of the process of Ireland upholding its obligations and keeping its promises to disabled people.

Margaret Murphy O'Mahony (Fianna Fail)
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I apologise but I had to slip out to the Seanad for a few minutes. Between the information the witnesses sent into the committee and all the questions they have answered very well this morning, I have no further questions.

I will give my remaining time to the witnesses if there is anything they wish to add.

Ms Nuala Ward:

The point the Senator made earlier that we would not start here is important. We have had a lot of debate internally about the ethics of this, wondering if it right that this is what we should. However, the reality is that there are 22,000 children waiting for an assessment of need. We are getting families ringing us every day totally distressed. That is reality. We have to live in the reality. That is why one of our critical recommendations for the committee is that nobody knows how this new legislation is going to pan out. There must be a legislative need to review it within three years to see if it meets the needs of children and families. No matter what, that is one of the key recommendations. That type of review mechanism is in other legislation. At least, the worries might be a little bit abated in the sense of it, but legally this has to be reviewed. That is one of the critical recommendations that we have brought to the committee today.

Dr. Sarah Cassidy:

I echo those points. Of course, we need to review the legislation in a larger way. If we were doing that, we are still going to need to integrate our services. Dr. Muldoon discussed the ESPEN Act and autism pathways. It sometimes feels that we are engaging in all these separate piecemeal. It is like a patchwork quilt that we are slowly trying to sew it all together. If we zoomed out and looked at what children need, what the human rights are, what the legislation is and if we started from a point of us of let us do the right thing here and let us meet children and families and collaboratively determine how it is that we meet their needs in health, education and mental health settings, then we should design a system from there. I recognise that is quite idealistic. We are currently in a scenario where we are in crisis. We need to do both. We need to solve the current crisis. There are lots of solutions for that, but in a larger way, we need to zoom out and look at what we want our health system to look like for disabled people. We have to slowly begin to design that and start as we mean to go on. Let us create that system because we know how. It is complicated, but it is not impossible.

Dr. Tricia Keilthy:

I will go back to Deputy Toole's question around the autism protocol because it is important that we have sufficient safeguards in relation to that. It goes back to the point around different tools that are being used and rolled out. While this has potential to give children more timely access to supports, it is important that the protocol does not limit or delay their right to an AON process. That the information generated through the protocol can be incorporated into the statutory AON process and that children do not have to undergo duplicate assessments or re-enter a waiting list for statutory purposes. It is just a bit of joined-up thinking on that. That is giving consideration in this process as well.

Ruairí Ó Murchú (Louth, Sinn Fein)
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Whatever happens, a review process is all important. At times, we are not great at that. A system is set up, then it just continues while everyone knows that there are one million and one mistakes. Some of them are unintended. I would not from here if I was the witnesses, but this is where we are. We have a particular problem. We want to offer and design a system. What we should be doing is having a conversation about design. I recall the Psychological Society of Ireland was before the committee, alongside the Association of Occupational Therapists of Ireland and the Irish Association of Speech and Language Therapists. They said that no one has had a proper discussion with them and what a best bang for buck system would look like. To some degree, I still wish we could do that. It is about as much as we can stretch this to be that, that is what it needs to be.

One of the best points that might have been made offline yesterday was about a fully staffed service, be it CDNTs, primary care or whatever, is not necessarily fully resourced. I am going to guess that there are approximately 450 positions that are unfilled at the minute on CDNTs. It may be slightly less or more. Nobody is going to tell me that all those people are in position and suddenly everything works. It is not fit for purpose at this point. That is not to take away from the huge work that people do, but we are not having the conversation. We are also having a pretend conversation that we are going to fill all the spaces there. We are going to introduce new in-reach teams. We are also then going to do the divil and all and introduce in-school therapies, but the fact is that the in-school therapies are starting in special schools, which is the reverse of mainstreaming. It means those schools are going to be hammered with applications because that is where parents are going to see is the place that they can go. There is no timeline in relation to this full system.

There is a big issue that all the witnesses brought it up. How do we shape this in such a way that can it work a wee bit better and the biggest deal is that there is a communication and someone to talk to? Bernard Gloster said that the only people that said anything reasonable about CDNTs were those who had a person to talk to who informed them. That can be a reality check sometimes for parents, but it can also be that the system is working with them, telling them what they can do and dealing with the biggest issue that parents generally have. If we are talking about 35% or 45% of those applying for AONs will end up with an assessment of autism, it is about emotion regulation that they can stay in a school setting and the school will work alongside them. That is open-ended. How do we best design this given that here is not where we want to start?

Dr. Niall Muldoon:

If we want to be the best, we acknowledge that we have already ratified UNCRPD and read about the Convention on the Rights of the Child, CRC. We look at those definitions and start from there. That would then be a marker in the sand. As we set up the EU Presidency, we start to say that children are first. We want to them to be at the core of everything. We are going to design it in a way that is right and compliant. We start from here and acknowledge that by adapting the definitions and legislation to match that. Therefore, every decision that needs to be made needs to be made in consideration of those. That is the starting point, then different decisions will be made. It will change the system in a different way and be looking at from a point of view of the person who we are serving. We are forgetting that we are serving people. We are not just paying for services. We are serving people. That is not a one-size-fits-all.

Ruairí Ó Murchú (Louth, Sinn Fein)
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We are failing to serve people.

Dr. Niall Muldoon:

That is correct. We are getting there too. A lot of work is being done. However, we getting the people enough. The huge number that went up from 6,000 in 2020 to 22,000 waiting now was our fault because we did not look at the service could be improved and who we were serving. What we tried to do was cut corners and find a different way to do things that we knew would not fit for the people who needed it. The parents did not allow that to happen. They called it out and went to the High Court. If we start and say that we are going to do it right from hereon in, it will take a little bit longer. It will take a little bit more legislative change. However, we will get to a system five years or ten years from now that will pay off. That is where I would start from, which is to legislate for the right definition and make sure that children and people with disabilities are at the heart of these decision makings.

Professor Eilionóir Flynn:

To echo what Dr. Muldoon said, it is essential to start with the definition, but also to start with the communication with those who are currently on the waiting list about what will occur at the result of this entire process. Again, people are not applying for this for the good of their health. They are applying because this what they think will lead to the concrete support for their child. We know that the law was written day one to ensure that it would not do that. The law was written to ensure that it would identify things that the child or the adult could benefit from and list what they might be without any guarantee of the person receiving them.

There is no point in tinkering around the edges with a system that was designed in this way. We have to have a bigger ambition for that. We have to redirect resources into concrete supports that people need. If we did that, I guarantee that a lot of people on the waiting list would no longer be awaiting an assessment of need. As Dr. Muldoon said that process is going to take time and going to involve communication and trust building with people who are in that position right now. That is essential. We have to take the long view on this. A short-term tweak to the system is not going to lead to the massive cuts in the waiting list, or if it does, it is at the expense of people who desperately need support and are not going to get it. That is not fair either.

Keira Keogh (Mayo, Fine Gael)
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Representatives from As I Am were here last night, and they were talking about how the Department of Education and Youth is working to remove the requirement for a professional report to enter special schools and special classes. Adam Harris brought up the concern about forward planning. Sometimes we use the diagnosis numbers to know how many places will be needed in special schools going forward. What are the witnesses' thoughts on that?

I will go back to Ms Flynn because she said in her last statement there that a lot of people on the waiting list are going there for a pathway to service. That has been echoed throughout. She said she guaranteed that many of those people might not be on the waiting list, but again, Mr. Harris quoted the National Disability Authority saying it had confirmed there is no evidence to support the claim that changes to how resources are allocated in the education system will lead to fewer people seeking access to diagnosis. I put that out there.

Professor Eilionóir Flynn:

I want to be clear that I was not talking about access to diagnosis; I was talking about access to the assessment of need. Some people are using the assessment of need to access diagnosis, but that is because they are not being offered another path to diagnosis. If we address those fundamental issues and gave people access to the support they required, people would not engage in a lengthy, bureaucratic, time-consuming legal process in order to get this. They are doing this because they believe this is the only solution. People need to be offered the support outside of the education system as well, because it is not only education that people are seeking supports in. They are for participation in day-to-day life, in society more generally, in cultural activities, in leisure, sport and everything. It is essential that we take that holistic picture of what people are looking for and provide it.

It is possible as well that the reason people say they have no interest in leaving the waiting list or are going to stick with this process to try to reach this goal is that the trust is not there. People do not have trust in the State when it says it will provide those services and supports because it has never done that. If the State were to demonstrate it, provide that, and be clear that it was not being provided only to people who were a thorn in the side of the State, who were willing to take it to court and who were going to make the most noise possible to ensure that the State provided what the disabled person in their life needed, then we would have a very different attitude. However, it would require a fundamental investment of time, resources and trust building to actually make that happen.

Keira Keogh (Mayo, Fine Gael)
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Sticking on that same topic, we have all seen the Facebook and Instagram ads run by successful solicitor firms trying to recruit people so that they can sue the State to get more assessments of need. Ms Burns brought up concerns around private providers doing assessments that are not fully necessary to identify needs. What does she think the scale of that problem is, and how would we address that?

Ms Lauren Burns:

From first-hand experience, I completely echo what Professor Flynn has said. Parents use AON as a route to a diagnosis or they see it as a way to access services. However, if a child were to get their diagnostic assessment in primary care or CDNT on the correct service pathway, they would not need AON to identify that. AON is an option for some parents, but if they are actually referred to the correct service at the right time, they are where they need to be. The outcome of an AON then becomes less important because they are already getting what they need.

Outsourcing anything to a private service runs the risk of maybe not doing just what is necessary. I am a firm believer as a clinician in the right assessment at the right time in the right place. We were talking earlier about the impact of assessments on children, and that is often overlooked in that we see this as a need - they need to be seen by this person or that person - but it is actually the impact on the child themselves. We have all been talking about how society needs to change, in that assessments often look at a problem within the child as opposed to perhaps more of a societal issue. If the environment were to be more adaptable and amenable to different ways of being, assessment would become less important. Direct assessments of identification and knowing about oneself are really key.

Keira Keogh (Mayo, Fine Gael)
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As a clinician myself in the past, I often felt hugely frustrated when a child went for an assessment with a stranger, and when we got the report back on paper, we would have the label of autism but actually they would not have captured this child at all because there was no relationship there.

Ms Lauren Burns:

The difficulty with AON is that, because it is not a service, if the team who supports a child were allowed to assess that child longitudinally, looking at response intervention, that would be how we would build up a picture of a child. There is a difference between having a diagnostic assessment where we look at a set of diagnostic benchmarks versus a holistic look at a child, and that comes over time and involves clinicians, teachers and, most important, parents who know them. I do not think the two are comparable. The gold standard is the one in the service. It is longitudinal, and that is going to provide the most support for that person going forward because it is holistic as opposed to a snapshot or one that is done because it is legally required as opposed to how necessary it is. Conflating or confusing the two can lead to excessive waiting lists or unrealistic expectations from educators, parents and clinicians as to what is actually needed.

Dr. Niall Muldoon:

Regarding forward planning for schools, just to draw on another strand, there is a national conversation or convention on education that needs to talk about inclusive education, which is the best possible way forward. The next 30 years of education are being talked about now, this year. We need to include this sort of conversation. How do we get the right people in the right place at the right time in an integrated, totally equal education system? This is a crucial part of that. It is to remind the Government that these children with disabilities cannot be separated out in the education world, in the real world, in their social world or in their family. We have to think of them together.

Dr. Sarah Cassidy:

I have a quick piece to add. The Deputy alluded to something there. Sometimes we are talking about whether a system or service is diagnosis-led versus needs-led. My position on this is that these are not dichotomous positions, because an assessment is often how we determine the nature or the extent of a person's disability, or it may be how to determine what somebody's needs are. Sometimes we are talking about removing the need for an assessment. I do not think there is ever going to come a time where we do not need assessment. We might get to a place where we can do a more streamlined assessment and be far more efficient, but we need to know how we design a really good intervention for individuals, whether that is via the school system or mental health care system or through physical health. We cannot remove assessment; that is a statutory right. Under the UNCRPD, it is a fundamental human right. We need to be really conscious that whether something is diagnosis or needs-led, those are not different. They can sit right alongside each other, and I believe they should.

Laura Harmon (Labour)
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I thank everyone for their contributions. I was tuning into the witnesses' statements and the meeting online, so I was listening in. A lot has been covered already in the session. It has been great and very in-depth. I thank our witnesses for answering so many different questions in such great detail. Something that stood out to me was, in talking about assessments of need, they are not just assessments. They are assessments of need, but it is about meeting the needs after the assessment and providing those supports. That is a key stand-out point.

I have three questions, the answers to some of which may have touched on already, but the witnesses may wish to expand. To those from the Ombudsman for Children, how would an ideal enforcement mechanism and expansion of powers for an appeals officer look in their view? What notice requirement and treatment of child-appropriate communication should be enshrined in these changes? For anyone who would like to come in on it, there was a mention of the omission of participation in education as a restriction and definition. How could the role access to education plays in a person's life be best represented in legislation?

Ms Nuala Ward:

Regarding what we think should be done regarding disability appeals and the complaints mechanism, that is an excellent point, because we are of the view from the complaints we get that people are being sent on a wild goose chase.

The complaints system for assessment of need is just not working. One parent told us the assessment of need for her child had been outstanding since 2022. When she went to make a complaint, she was told to get in line because there were 458 complaints ahead of her.

As members know, the current system does not guarantee people services. The assessment complaint officer or the disability appeals officer cannot enforce services. People have to go to court, and that is fundamentally wrong. It is creating an unequal system for people who have the strength and the means to go to court to get services. They obviously have a right to do so but there are other parents and children who cannot do that. That has to change because at the moment it is not fair.

There is one other practical piece that could be done, but maybe not through this legislation. It is bewildering for families and children. There needs to be an advocacy service for children and parents to help understand the system. We deal with complaints every day and we are lost and bewildered. We are left trying to figure out how someone can be on a primary care waiting list, get sent to CAMHS and then get sent back. It is just not fair. Those would be the key issues that we want addressed. The complaints system absolutely needs to be looked at.

Dr. Clíona de Bhailís:

Coming in on the last point that Ms Ward raised on the advocacy services and supports for people to navigate the system, we recently completed some research for Inclusion Ireland and spoke with parents, predominantly of children with intellectual disabilities, about their experiences of the process. They echoed some of this, but with some reservations on the idea of how tricky it is to navigate the incredibly bureaucratic and complicated systems. People have to go here to get this and over there to get something else. There are constant turns and moving over and back. People are very confused about where they can go for things which may also be feeding into the reliance on something like assessment when other things are not in existence and people do not know where to go. Of course, we need a more holistic system that addresses people's needs.

The parents were also reluctant to say that they definitely wanted that pushed because they were very concerned that it would just be yet another list, yet another form and yet another process that made them wait to go through a system to have them do it. If we were to approach something like that, we would need to be very careful that it did not go in the way that the complaint system and things are going. It needs to be exercisable and something that actually works for people. It needs to follow through and help them make change. It needs to help them navigate the system and fill in the right form at the right time if that is what is needed.

Maurice Quinlivan (Limerick City, Sinn Fein)
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I thank Dr. de Bhailís. She might send the committee a copy of the report she referenced when she gets a chance.

Ms Lauren Burns:

On educational supports, with the way the circulars are shifting, they have, thankfully, moved from being diagnosis driven to being needs led. My sense of what has been said today is that that is what is important. If we meet children where they are at and give them the support they need when they need it, their outcomes will be significantly better than if they are waiting on a list. We need to integrate the supports that are afforded to schools, such as NEPS and in-therapy supports, to dovetail with the HSE. Integrated services is probably the buzzword of today in terms of how we can support people.

Maurice Quinlivan (Limerick City, Sinn Fein)
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That concludes our discussion for this morning. From what I have seen over the meetings we have had and the submissions we have received on this, a lot of people are disappointed with the amendment that is coming forward. As somebody said this morning, it is just tinkering around the edges. We will look at that as we go forward with other submissions.

I thank all the witnesses for participating. Their contributions are very useful for us. I thank the Ombudsman for Children and his team, the Psychological Society of Ireland and the team from the Centre for Disability Law and Policy for coming in today and providing the briefing materials in advance. It is very useful for the committee and will assist us in our deliberations when we report on this. The insight and expertise provided today are critical in shaping and improving the legislation. With the agreement of members, I propose that we publish all the opening statements on the committee's website. Is that agreed? Agreed.

We will now go into private session to deal with some housekeeping matters.