Children's Unmet Needs: Discussion

Apologies have been received from Deputies Phelan and Cathal Crowe. Senator Flynn is expected to substitute for Senator Ruane. Before we begin, I request members to sit only in the permitted seats and in front of available microphones to ensure they are heard. This is important because not doing so causes serious problems for broadcast, editorial and sound staff. I also remind them to maintain social distance at all times during and following the meeting.

Our meeting today is to engage with stakeholders on the Ombudsman for Children's report entitled Unmet Needs. I welcome everybody and sincerely thank our witnesses for joining us. Ms Linda Comerford and Ms Vanessa Murphy are representatives of Enough is Enough. We also have Mr. Mark Smyth, president of the Psychological Society of Ireland, who is accompanied by Mr. Odhrán Allen, chief strategy officer with the Association of Occupational Therapists of Ireland. We also have Mr. Gareth Noble, children's rights solicitor, who is accompanied by Ms Naomi Mulvany, legal assistant. Mr. Smyth has kindly agreed to deliver a joint opening statement on behalf of the Psychological Society of Ireland, the Association of Occupational Therapists of Ireland and the Irish Association of Speech and Language Therapists.

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

The purpose of our meeting is to discuss the contents of the report published by Dr. Niall Muldoon, Ombudsman for Children, entitled Unmet Needs. The report was published in October 2020 with the objective of shining a light on the challenges facing children in Ireland who require access to an assessment of their needs. I am sure the witnesses are aware that we had the Ombudsman for Children before the committee last week. I will outline the format of the meeting. The order of witnesses for the opening statements is Ms Comerford followed by Mr. Smyth and then Mr. Noble. Where possible, speakers should stick to approximately three minutes for opening statements. Once all statements have been delivered, I will call on members in the order that they indicate to ask questions. I invite Ms Comerford to maker her opening statement.

Ms Linda Comerford

I thank the Joint Committee on Children, Disability, Equality and Integration for inviting me to appear today to discuss the challenges faced by children and their families who require and are awaiting an assessment of need.

For those who may not know, the campaign Enough is Enough was founded four years ago by a group of parents. We were all parents of children with additional needs and we were all extremely frustrated at not being able to access timely assessments and services that our children needed. We decided that we were no longer going to sit back and tolerate our children being continually failed by a broken system. We wanted our voices and the voices of our children, both young and older, to be heard and so Enough is Enough was born. We do not want scraps and empty promises; we want rights and action. It is simply not good enough that families have to consistently fight hard for vital assessments and services that their children require to support them in their development and everyday life.

Data to the end of September show that the backlog of cases for assessment of need has grown from 5,533 just a short while ago to 6,058. Of those, the HSE stated just 185 were overdue for completion because of exceptional circumstances. These are not just figures, they are children. This is a shocking indictment of our Government. Despite a legal obligation on the State to complete assessments within three months of an application being received under the Disability Act 2005, this does not happen and many parents are forced to take legal action. As a parent, it is gut-wrenching to see one's child struggle and not be able to help. We fight for assessments and services in order that we and our children can get the support we desperately need.

The fight for an assessment of need is just the beginning. When an assessment is finally completed and a child receives a service statement outlining the therapies and supports he or she needs in order to thrive, parents have to once again fight for their child to receive these therapies as the child's name goes on a lengthy waiting list to access the supports required with many of them ageing out of one list and having to start the process all over again on another list. This is extremely frustrating and very damaging to a child's well-being and development.

We also have many concerns regarding the new standard operating procedure for assessment of needs. How does the HSE think that a desktop examination is an appropriate way to determine if a child meets the definition of disability? Parents and guardians fill out the application forms but are not professional therapists and may fail to provide information or fail to see areas of concern in their child that a professional would notice. This means their application may be rejected and the child will not be assessed or will have to wait longer to be assessed should the parent have to provide additional information or where the HSE facilitates an appointment with an appropriate health professional to establish more detail regarding the child’s presenting difficulties.

What parents want is very clear. We want a clear pathway to services and supports from time of diagnosis to end of life, timely assessments followed up by appropriate therapies and services that can be accessed when needed, full enactment of the Education for Persons with Special Educational Needs, EPSEN, Act and a commitment from the State to deliver a rights-based approach to services and support for persons with disabilities and do away with the loophole that provision is "subject to resources". We want an oversight committee with a regulatory remit to oversee and govern the delivery of disability services. We want our children to be treated with respect and dignity and not as if they were invisible or lesser than others and for our voices to be heard. We do not want pity or empty promises; we want action and positive change.

On behalf of Enough is Enough, I again thank the committee for inviting me to attend. I am happy to take any questions and discuss this issue more comprehensively.

I invite Mr. Smyth to make his opening statement.

Mr. Mark Smyth

I thank the Chairperson and members of the joint committee, on behalf of the Psychological Society of Ireland, PSI, the Association of Occupational Therapists in Ireland, AOTI, and the Irish Association of Speech and Language Therapists, IASLT, for the opportunity to address them. We welcome the opportunity to contribute to the discussion generated by the report from the Ombudsman for Children titled Unmet Needs.

Our representative bodies share the concerns of the Ombudsman for Children about the unacceptable delays that have been experienced by many children and families who have required an assessment of their needs. There has been a long and sad legacy of assessments not being completed within specified statutory timeframes. This has resulted in parents and children enduring years on waiting lists, having to pay for expensive private assessments or trying to challenge the HSE in the courts to have their children’s needs identified. None of this is good enough.

To complete evidence-based assessments in a timely fashion, children’s disability services and assessments of need should have been resourced with the required staffing. Instead of providing the staffing required, the HSE has embarked on an alternative, less widely publicised pathway that is of great concern and which we draw to the attention of the committee. In January 2020, the HSE implemented a new standard operating procedure, SOP, for assessments of need across the country. While our professional bodies are supportive of an SOP in principle, we have significant concerns regarding the procedure in its current iteration. All of these concerns were relayed to the Oireachtas Joint Committee on Health in June 2018and were reflected in the final report by the committeeon the matter. The implementation of the new SOP has proceeded despite our professional bodies clearly stating that it is not in the best interests of children and, we would contend, without in any way acknowledging the recommendations of the committee. Furthermore, the commitment to meaningful engagement with professional bodies to address our concerns given by the HSE to the health committee in 2018 was not honoured.

It remains our considered opinion that the changes to clinical practice described within the SOP will, in many cases, prove detrimental to children and their families. Our members are also concerned that compliance with the SOP could lead to them being in breach of codes of conduct and ethics of their respective professional body and the Health and Social Care Professionals Council, CORU. The SOP is neither evidence based nor based on good practice in assessment of children with disabilities.

It is our opinion that the preliminary team assessment, PTA, model embedded within the SOP being implemented by the HSE is contrary to the spirit of the Disability Act 2005, which was developed as rights-based legislation. The PTA is a brief screening assessment. Its introduction has significantly reduced the level of assessment provided to a child under the statutory framework of assessment of need. Prior to the SOP, the child’s needs determined the level and type of assessment provided. These assessments varied substantially because children’s needs vary. However, the SOP replaces this with a uniform screening assessment to be completed by two clinicians in a maximum of 90 minutes, regardless of the child’s presentation and needs.

The new SOP does not facilitate the diagnosis of, for example, autism spectrum disorder or intellectual disability and will no longer be provided as a part of the assessment of need protocol. Instead, children will be identified as having "health needs" in the service statement.

The Disability Act states that an assessment report will state whether the applicant has a disability, indicate the nature and extent of any disability and describe both the health and education needs occasioned by the disability, as well as the health or education services required to meet those needs. It is our view that in the majority of cases it will not be possible for a psychologist, an occupational therapist or a speech and language therapist to answer these questions or to feed these back to parents within the maximum timeframe permitted within the SOP of 90 minutes. Adequate time with parents or guardians and the child is required for the purposes of direct assessment. It is also essential to give parents or guardians time at the conclusion of an assessment to process their reactions to any diagnosis or other feedback.

In our opinion the HSE’s introduction of the PTA in place of comprehensive assessments will give rise to the following risks. A child may be deemed likely to have a disability but require further comprehensive assessment to determine the nature and extent of their disability. However, as the child will already have completed his or her assessment of need, AON, as defined in the SOP and not the Disability Act, there will be no defined legal timeframe within which this further assessment must be carried out. Our members have reported that since the implementation of the PTA this month, the outcome in almost all cases has been a recommendation for further assessment. It is crucial to note that this further assessment will not occur within the legislative framework of the Disability Act. Accordingly, there are no statutory requirements for assessments to be completed within an acceptable timeframe. It is also important to consider that this is only to complete an assessment to identify needs. This is not the same as receiving intervention which should follow assessment.

A child may incorrectly be deemed not to have a disability because the disability was not apparent during the brief 90-minute screening. The absence of evidence in a single screening session and setting is insufficient evidence to warrant a determination of the absence of a disability. If a child receives an incorrect determination of no disability, he or she will consequently be denied more comprehensive assessment and receive either no or inappropriate intervention. A child’s difficulties may be incorrectly outlined due to a comprehensive assessment not being permitted within the PTA model.

In many geographical areas, each of these scenarios will result in substantial delays for many children and their families in accessing a wide range of appropriate and needs-based financial supports, educational provision and health services. In addition, in many cases children risk being placed on potentially inappropriate and long waiting lists for assessment or intervention.

The Disability Act does not entitle children with disabilities to services to meet needs identified through the AON process. Having often waited for lengthy periods for full assessment to be completed, children with identified needs then must go on a new waiting list to receive psychology, occupational therapy and speech and language therapy services. The wait time for these services can be months to years depending on geographical location.

Rather than seek to address those challenges identified by the Ombudsman for Children, the primary goal of the new SOP would appear to be solely to enable the HSE to meet its statutory obligations under the Disability Act. In order to achieve this goal, the SOP seeks to replace a comprehensive professional assessment process with a uniform brief screening session, as well as to designate diagnostic assessments as health needs. We are already seeing the entirely predictable result where the assessment of a child’s needs indicates that the child needs an assessment. The original mistake made in developing the AON process was in separating assessment from intervention. Assessment and intervention should be part of a seamless service offered to children with difficulties. This flaw in the system is now further compounded by the PTA.

Four case vignettes attached to our written submission briefly illustrate what is now happening every day across the country. The implementation of this new approach will exacerbate an already intolerable situation for children and their families. The Psychological Society of Ireland, the Association of Occupational Therapists of Ireland and the Irish Association of Speech and Language Therapists seek the support of the committee in recommending an immediate cessation of the SOP. We also seek the committee’s support in recommending the HSE take a standards-based approach grounded in good practice models of professional assessment of children with disabilities.

I thank Mr. Smyth. I invite Mr. Noble to make his opening statement.

Mr. Gareth Noble

I thank the Chair and the Joint Committee on Children, Disability, Equality and Integration for the kind invitation to attend today’s session. I am privileged to appear alongside Mr. Smyth and Ms Comerford, both active and brave campaigners in this area.

I appear before the committee in the context of an excellent study by the Ombudsman for Children on the unmet needs of children whose assessments are required and where services are badly needed. I appear before the committee as somebody who has attempted to use advocacy and legal avenues to highlight the challenges, deficits and gaps in provision brought to me on behalf of children and their families, as well as assisting those families navigate the system and the hurdles they face.

The Disability Act 2005 created a most progressive path for children in having their assessments and services identified. The intention of the Oireachtas at the time was to ensure that children, within a short period, could have their assessment needs determined. The purpose of the Act is to ensure that assessments are conducted to ascertain whether a child has a diagnosis or a disability, as well as the extent of that disability. The Disability Act sets out clearly that the provision of an assessment must be commenced within three months of its initial referral, completed without undue delay and certainly no later than three months from its commencement.

It is a national scandal that 91% of children do not receive their assessments within the timeframe prescribed and mandated by law. This has led to untold and ongoing damage to, stress for and real prejudice against children. It cannot be dressed up as being anything other than a breach of their rights. It is also significant to note that the Oireachtas made it clear under the Act that an assessment should be carried out without regard to costs or capacity to provide the assessment.

The dilemma faced by many parents when their children are not meeting their developmental milestones, presenting with challenges or being left behind by their peers - where they may be non-verbal, unable to perform basic tasks independently and are totally reliant on their care givers - is to how best to proceed to meet the needs of their children in a timely manner. The Disability Act provides them with a mechanism to achieve a pathway to progress. Sadly, however, it is not just the letter but the spirit of this legislation that has been and continues to be bypassed, circumnavigated and routinely ignored.

The overall health budget for 2020, as set out in the approved service plan, was €17 billion. The priority provided to children in assessing and meeting their needs remains woefully inadequate, however. Why do children require assessments? It is always important for any parent to determine the needs of their child. It is also crucially important for children that they receive that intervention and assessment in a timely manner while ensuring there is no further regression, prejudice or loss of opportunity. An assessment of need is often a gateway to other services, to an appropriate type of school learning environment, to special needs assistant provision, to resource teaching hours and to applications for domiciliary care allowance to help support their needs.

Against a backdrop of failing children and their basic entitlements, the HSE introduced a new model of how children are to be assessed in January. It did so without any adequate communication with the representative bodies or without any adequate concern for the needs of the children in question and their families. It has in effect sought to kick the can down the road in the proper assessment of children in a blatant and cynical way.

Under the new model children will no longer be assessed as they have heretofore under the Act. There will be no multidisciplinary assessments which seek to determine what the Act requires, namely, to determine whether a child has a disability and the extent of those needs. Instead, we have a triage system where an initial assessment will be conducted to ascertain whether further assessments are required. The child in need of an autism spectrum disorder, ASD, assessment will not have it commenced or completed within the six-month time limit prescribed by law or at all. Instead the HSE has sought to include such assessments in service statements which they will then claim are subject to resources.

How can we create a service statement setting out the services needed for children when we have not assessed what those needs are in the first place? How can this model be in compliance with the Disability Act? Whose interests does it serve? One thing is clear - it does not serve the interests of children requiring early intervention.

In a High Court affidavit provided and endorsed by the court over two years ago, the renowned expert in autism, Dr. Rita Honan, set out the clinical rationale for early identification and early service delivery. In her affidavit she stated that the diagnostic assessment is the gateway to treatment and the subsequent reduction of symptoms, as well as increased cognitive and adaptive functioning for the majority of children on the autism spectrum. Every day this is delayed leads to missed learning opportunities. Dr. Honan stated that retrospective analysis suggests that differences in development between typically developing children and those with autism may be apparent at an early stage in a child’s development. Detecting young children at risk before the full impact of the syndrome is present and implementing treatments can alter the course of early behavioural and brain development, thus resulting in improved outcomes.

The HSE is well aware of the critical need for early diagnosis and dedicated intervention. The Ombudsman for Children report clearly highlights the continuing challenges faced by children and by their families. During the Covid-19 pandemic the UK Parliament amended legislation that suspended the operation of certain legal requirements for children.

To the great credit of this Oireachtas, we did not do the same. The Disability Act remains in force and stands tall as progressive legislation. It simply requires the HSE to implement it. I fear greatly that a substantial further number of children face the real risk of being lost and their childhoods diminished as a result of the new model, and that service delivery will therefore be even more out of reach than previously.

As for what this committee can do next, I would welcome greatly a motion, tabled in both Houses of the Oireachtas and taken on a cross-party basis, that reaffirmed the Oireachtas’s intentions and aspirations regarding children and their assessments under the Disability Act. A reaffirmation of these assessments being delivered in full, on time and as provided for within the six-month period set out in the Act would be a powerful response to what is emerging. It would vindicate the position of the Ombudsman for Children and his report and of the representative bodies holding the line against this non-child-centred approach. It would recognise the campaigning efforts of many groups I have had the pleasure of working with on children's rights issues, including the DCA Warriors, Dyspraxia/DCD Ireland, Down Syndrome Ireland, Family Carers Ireland, AsIAM, the Involve Autism D6 group, the D12 campaign for an autism specific school and inclusion, the Children’s Rights Alliance and many others. Most fundamentally of all, it would show to children and their families that the Oireachtas has not forgotten the importance it attaches to the full workings of the Disability Act.

Finally, I thank this committee for bringing this vitally important matter for children into the public arena. It is incumbent on all of us to ensure that the needs of these very vulnerable children and their families are met and their potential as fully functioning young people and adults can be realised. I know many Deputies and Senators have often said to me how busy their constituency clinics and email inboxes are from families on this issue. It is a real challenge up and down the country and it is therefore vital that we get this right. This is about enabling children. It is about helping them to be the best that they can be and removing unnecessary obstacles and barriers to allow them to reach that full potential.

I thank the witnesses for their statements. I will just briefly explain the format for questioning. Time is very limited, as we must vacate this room at 6 p.m. due to Covid regulations. I ask Deputies and Senators to address their questions to a person or persons. Five minutes are allotted for each questioner, which includes the answers, so I ask both members and witnesses to be conscious of that. I ask those who have not yet indicated that they wish to speak, to do so now.

I thank the witnesses for attending the committee today and for all the work they do on behalf of these children. Listening to Mr. Noble calling out the names of all the different organisations that come together to fight for these children's rights was stark. It is actually shameful how we treat those children. I have a number of questions.

We have heard much about the impact on children caused by the lack of services. I ask Ms Comerford or Ms Murphy to tell me about the impact on the families of these children, because theses children have parents and siblings who will also be impacted by the lack of services. When people come to me, parents are often at the end of their tether while trying to support their children. I ask Ms Comerford and Ms Murphy to talk about the impact on the wider family.

My question for Mr. Smyth is how easy is it to assess a child in 90 minutes. I am a mother of four children and were I to put my child into a room with a stranger who was tasked with figuring out where the child was coming from, whether there were any issues to be addressed or determining the child's personality type, my child would completely close up and would not get involved. I am just wondering whether that is easy or difficult. What are the potential impacts when children do not get the services they require when they require them? Does it come to a point where the situation is irreversible and it is impossible for a child to catch up on lost time if he or she has not received the early intervention he or she needed?

Mr. Noble works with and represents many families. Has he seen an increase in the number or the severity of cases? If so, what is the remedy for that? Is there a cost to the State at the end of that process? Do the children get the services they need at the end of that process?

Ms Linda Comerford

On the question of the impact on the wider family, parents only ever want the very best for their children. If a one notices that one's son or daughter is not meeting his or her developmental milestones or if something else sticks out for one, the first thing a parent will want to do is to get help and to access the therapies and services to remedy that or at least to help with it. However, it often happens that parents reach out for support but do not know where to go because there are no clear guidelines and time will have passed before they find out that they need to apply for a needs assessment. The type of assessment available to parents and children depends on where they are in the country. For example, Ms Murphy and I could have very different experiences in accessing assessments for our children. Ms Murphy may have a good experience with her son and I could have a horrendous experience with my daughter. Her son may be assessed at home and at school, yet my daughter may only be assessed in a clinical setting. Therefore, there are vast differences in service provision.

Parents are trying to manage the needs of a child at home when they do not really know what to do. They are not qualified therapists or professionals and do not pretend to be. Consequently, they are trying to do their best, while caring for other children. Many families have more than one child with extra needs. For example, in my home, three out of four of our children have extra needs and juggling that is really difficult. I have spoken to families the length and breadth of the country and many of them are suffering from burnout. They believe they are failing their children, despite the fact that they are doing everything they can for them. Burnout is very real and that cannot be overstated. I say that as a parent who has suffered from extreme burnout. It was an horrific place to be and there was little or no support. There is also a fear among parents that if they say they are suffering from burnout, they will be threatened with the possibility of their children being put into foster care by the HSE. Therefore, they know they need help but are afraid to reach out for it.

This can have a huge impact on relationships, whether they are with partners or extended families. Sometimes due to the fact that extended families do not live with the child, they may not see the differences the parent sees and the child may behave differently in different circumstances. Often, people will say that a child does not look as though he or she is autistic or has a disability. This makes it very difficult for parents and it is stressful.

Mr. Mark Smyth

On Deputy Whitmore's question as to whether it is possible to complete a evidence-based assessment in 90 minutes, the answer is "No", as it is not. None of our psychology, speech and language therapy or occupational therapy colleagues would stand over that. It goes completely against all standards that we have and is contrary to our training on evidence based practice. The HSE is asking us to rely on a subjective opinion, as to whether a child has a disability within too short a timeframe. It also goes against all international standards and our training using psychometric testing to be able to get a standardised approach to testing. Staff are being put under intolerable pressure to come to a conclusion based on that 90-minute assessment already, where they literally have to tick a box which states that a child either has or does not have a disability. As we explained in our opening statement, if the clinician ticks one or the other, the child may then go on for further assessment, because it is an assessment to determine whether or not the child needs an assessment. This means that they no longer come under the scope of the Disability Act and then must wait for further assessments. It is a significant challenge and an impossible decision for a clinician to make which, as we have outlined to the HSE, may place occupational therapists, psychologists and speech and language therapists in a position in which they are expected to act contrary to professional and CORU standards. Services are grossly inadequate at present in respect of the number of clinicians available and if they are being put in a place where they are being asked to act contrary to their training, the recruitment and retention of disciplines within the disability services will become much more difficult.

Significant risks also exist in respect of unmet needs. If a child is not designated as having a disability, there are mental health risks for that young person as he or she grows older and wonders what is wrong with him or her, why he or she feels the way he or she does, and why he or she cannot keep up with his or her peers, because such children do not have an identified need for which they can receive support. I wish to echo the points made by Ms Comerford on the cost to parents. The cost to parents of having unmet needs identified makes parents feel like they have missed something, they are not good enough parents and this is simply not fair. Parents are exhausted; they are full-time carers 24-7; they are sitting on waiting lists for three to five years; they are firefighting; fighting the HSE and fighting within the courts. Therefore, the cost in respect of not getting an accurate assessment of needs is a cost to the whole family and not just to the child.

Mr. Gareth Noble

The answer to the Deputy's question is "Yes", there has been a huge increase in cases.

One of the reasons for that is that there is much more information where parents' needs are concerned, which is down to people like Ms Comerford and her group, who have raised awareness of this issue.

A complaints procedure is built into the Disability Act whereby if someone has not had an assessment commenced and completed within the timeframes permitted by the law, he or she can enter the complaints system. The problem we have found is that the complaints officers determine in our favour but the HSE ignores its own complaints officers. Under the Act, someone could enforce in the Circuit Court the determination of the complaints officer if it has not been carried out within three months. This means a further three months have to elapse before he or she can go near the Circuit Court. When we go to the Circuit Court, the HSE never defends its positions. It concedes on the first day. This has a financial cost. However, such costs are dwarfed when set against the financial costs that parents have to deal with while waiting, for example, paying for private assessments that often are not recognised by the HSE or educational providers and engaging private services, in particular speech and language therapy. There is also the emotional cost that Ms Comerford has spoken about so powerfully.

I thank the witnesses for their testimonies. I read their opening statements this morning in preparation for this meeting. My blood was boiling. I am a relatively new Deputy - I was elected a year ago this month - and this is my first time being a committee member. I struggled last week when I heard the Ombudsman for Children say that moving a child from one list to another was just an old-fashioned three-card trick. Today's testimonies compound that statement. It is worrying.

I will ask four questions of the witnesses. I imagine Enough is Enough and the others feel like it is like Groundhog Day, with them having to tell their stories time and again to a load of politicians and hoping that something will change. I have been on the other side. I was involved in campaigns, not concerning children, but other issues about which I and my party were passionate. Just keep at it. Things will get better if there is enough political will.

Regarding the new standard operation procedures, I believe it was mentioned that parents must fill out some of the report themselves. Will Enough is Enough elaborate and tell me how difficult doing that is? Will it lead to more unmet needs for children? I am seeing another three-card trick. It is a way of ticking a box and saying something is done without there being any follow-up.

Mr. Noble spoke about a cross-party motion. I like that idea. It is relevant and something that our committee could pursue. Has support from parties been received or has there been a conversation with them? Would members of this committee be interested in supporting it? We in Sinn Féin would be in favour of it.

The barrier in the HSE to implementing the Disability Act was mentioned. What are the witnesses' thoughts on that? Why is that the case? Is it down to money, staff or political will? Why is there a reluctance to implement the Act?

My final question is for Mr. Smyth. The report of the Psychological Society of Ireland discussed psychology, occupational therapy and speech and language therapy services. These services are better in some areas than others. Has there been any research into why some areas are outperforming others and whether their services can be replicated? If a service is working, leave it working. If it is not working, we should find out how others are doing better. We need to move away from the postcode politics of people getting better services depending on where they live.

Ms Linda Comerford

When someone applies for an assessment of needs, he or she is given a form by a therapist. It has ten or 12 pages and much of it is box ticking. It asks various questions about the child and the areas in which he or she is struggling. The form will be difficult to fill out for some parents because they also have a disability. I might notice something about my child, but it might be more significant if a professional notices. For example, I recently noticed my son had a swallowing issue. I did not believe it was a major issue, but upon assessment by a speech and language therapist, he now has a choking hazard and needs a thickener. I would not have realised it was that serious. Issues like that can go unnoticed. If I tick the wrong box on the form or, because I do not see something as being serious, I do not see the need to relay it through the form, my son might not get an assessment or the assessment officer who gets the form might not see a significant need. Whether an assessment is granted is often based on what the parent puts on the form, but all parents are different. A parent might be accurate on the form or be very clued in, but we are not professionals. We are just noticing issues with our children that we want rectified and we want professionals to help us with that. Based on our answers, however, we might not get those professionals.

I thank Ms Comerford.

Mr. Gareth Noble

I thank Deputy Ward and I very much like the hat he is wearing today. He asked whether I had had a conversation about my suggestion on a cross-party motion. I have not. Perhaps I will leave it to the committee to decide how to take the suggestion forward. It would be a powerful message to send out on foot of the Ombudsman for Children's careful study.

I have lost count of the number of theories I have in terms of speculating as to why this is not being done. It probably comes down to a lack of planning, resources and, most of all, priority. I can think of a large number of examples of situations where assessment officers themselves have told parents that assessments would not be done for two or three years and that, if they wanted to identify appropriate school placements, they would be better off taking the private route. I know of parents who have taken up two or three cleaning jobs just to pay for that assessment. In Deputy Sherlock's constituency in Cork, we have seen private service reports being done but not being recognised by the HSE. In one case I was involved in, the HSE refused to recognise a report that was conducted by a private service provider. The mum then applied for an assessment of need, there were major delays and we brought the matter to court. The HSE then commissioned the same private service provider in Cork to do the assessment on its behalf.

There is a great deal of wastage in the system. There is a lack of thinking. Most of all, there is a lack of priority. The money is there. It is just being diverted elsewhere.

Mr. Mark Smyth

I will follow on from Mr. Noble's point in response to the Deputy's question on whether this was down to money or staff. It is down to both. A good argument has been made that, if there are long surgery lists, one hires more surgeons. One does not shorten the length of the surgery, offer fewer surgeries or ask someone else to do it. It is a case of insufficient resources.

The system is working well in some areas. They have sufficient staff to meet needs. We have a postcode lottery, and that is not good enough for parents. There is also a recruitment issue with the hiring of health and social care professionals, HSCPs, through the HSE panel system. It does not get the right staff into the right place. That is a barrier to making the system work.

The current standards-based system works. In areas where it works well, though, it will not work any more after the new preliminary team assessment, PTA, model has been introduced. The committee should be in no doubt that the PTA model is not the equivalent of a yellow brick road to enlightenment whereby a child's needs will be identified and met. It is a pathway to a further Oireachtas committee hearing in a year's time when children's waiting lists have moved from three-to-five years to five-to-eight years. I spoke to colleagues this morning, and none of them had a waiting list of less than three years. In one area, parents were getting standardised letters saying that, at the age of five years, their children would be seen at ten and, at the age of ten, their children would be seen at 15. We need to get ahead of this now so that we are not back here in a year's time and exactly what we have predicted has happened.

I thank the witnesses. It has been compelling evidence that has dovetailed very much with the evidence of the ombudsman last week. The AOTI submission states:

The new SOP does not facilitate the diagnosis of, for example Autistic Spectrum Disorder or Intellectual Disability and will no longer be provided as a part of the AON protocol. Instead children will be identified as ‘health needs’ in the service statement.

Mr. Smyth might help me to understand that more fully, as succinctly as possible. If it does not take in ASD and ID, what does it take in? If they come under health needs, will that not exclude potentially thousands of children? Children are being de facto reclassified, which means the services do not have to follow. Is that the case?

Mr. Mark Smyth

I will pass that question to my colleague Mr. Allen, from the AOTI, to answer on our behalf.

I would like Mr. Smyth's perspective on this, if I may, because he is a front-line professional.

Mr. Mark Smyth

Of course. I will start and my colleague can add to that. The preliminary team assessment will identify as a conclusion that the child has health needs and those health needs are to have further assessment to clarify what they are. As some of the other witnesses have noted, this is a box-ticking exercise . At the bottom of the form, the clinician will be asked whether the child has a disability, which puts the clinician in a position of not being able to answer that within the 90 minutes. The need is further assessment. The child, from the HSE's perspective under the spirit of the Disability Act, has had an assessment but the assessment has concluded that there is a need for further assessment.

As an example, I spoke to a colleague earlier. In their area, they had completed 26 PTAs within two weeks. The outcome of all 26 PTAs was that the children needed further assessment. The HSE has met its obligations legally under the Disability Act, but the children will now move on to waiting lists that currently range from three to five years. Once the flood of new cases come into that, however, those waiting lists will continue to grow.

Mr. Odhrán Allen

As Mr. Noble said earlier, assessment is the gateway to diagnosis, and the assessment that professionals previously provided is not being provided within the new PTA model. Without a diagnosis, services cannot be accessed; that is the critical issue. If we step back, the real issue, and the original mistake in the AON process, related to separating assessment from intervention. Assessment and intervention should always be part of the same seamless service offered to children. That flaw in the system has been compounded by the new SOP-PTA model.

I do not want to put words into anybody's mouth but my assessment of this, for what it is worth, is that with the SOP, some €7.8 million will be spent by the various community health organisations, and there will be any number of PTAs through the SOP model, but it will not deliver services, in essence, for children. Is that correct?

Mr. Mark Smyth

No, the €7.8 million given was to clear pre-existing referrals to AON that were received by the HSE prior to 1 January 2020. That was to clear the existing backlog of evidence-based assessments completed by clinicians. The €7.8 million is not towards the PTA model but the pre-existing one.

It is retrospective.

Mr. Mark Smyth


It is now the case that the ombudsman has objectively critiqued this model, as have three compelling witnesses. There is an evidence base, based on any rational , independent or objective assessments, to suggest that the policy is completely wrong and needs to be reviewed, reversed, rescinded and reshaped into a new policy, taking into account voices such as those of the three compelling witnesses we have heard from during this meeting. That is something the committee will take seriously.

What are the witnesses' views on the consistency of outcomes for children among the CHOs? Reference was made to recruitment. I received a response on 17 September 2020 to a parliamentary question in which I asked the number of occupational therapists hired from each university by the HSE. The witnesses might note the following figures on the back of an envelope if they have a pen handy. In 2016, 135 were recruited, while in 2017, 120 were recruited, which was a reduction. In 2018, there was a further reduction to 119. Thus far in 2019, there have been 73. The difference between 73 and 119 is stark and I imagine that when the figures come in for 2020, there will have been a further reduction. How are we going to crack the conundrum of ensuring there are sufficient trained personnel to deliver the services, depending on what that service needs to look like, following our forthcoming interaction with the Minister? I will ask him these same questions. How are we going to deliver for children if there are not enough people who are suitably qualified to assist children such as Linda's? What is the best way to ensure we recruit enough people in order that every child can get access to the services?

Mr. Mark Smyth

Our professional bodies, on behalf of all the health and social care professionals, released a report last week on the HSE's national panel system of recruitment. Among all the HSPCs that responded - more than 1,200 - 92% suggested that the current panel-based system of recruitment was not fit for purpose. Despite the Government over the past ten years noting a recruitment and retention issue in respect of health and social care professionals who are required on the ground to deliver these services, its own method of recruitment is one of the greatest barriers to getting staff in place.

Over many years, I have seen statistics where the HSE talks about recruitment of professionals. They may be approved posts but may not necessarily be in place. Some of the published statistics refer to approved posts but the time it takes to get that person in post is an entirely different matter. We also need to examine, across the whole spectrum of psychology and speech and language and occupational therapy, the breadth of experience and what grade the posts are. We have a grade structure for clinicians on the ground, most of whom are senior. Many of these children and their families require significant expertise among the clinicians to be best supported, but also that is also required to support the staff in order that the staff will not burn out early in their careers. We need to ask difficult questions about posts being created and what level of seniority they are to ensure that the appropriate level of supervision is available within those disciplines to provide the support those families need.

Mr. Odhrán Allen

I might add that we know what best practice is in assessing and providing services to children with disabilities. If the professional bodies were consulted, we could say what the best approach is, but we have not been consulted. The SOP and the PTA model will not align with what we know best practice is, but even if we were following the best practice model, we would need staffing and infrastructure to deliver that, but neither the right model nor the staffing and resources is in place.

Does the PTA-SOP system call into question whether professionals are adhering to their codes of conduct in terms of how they deal with from a moral or ethical point of view with the child who comes before them for a 90-minute desktop service?

Mr. Odhrán Allen

Yes. When representatives of the PSI and AOTI met the Oireachtas Joint Committee on Health two years ago, we expressed that concern. We are expressing it. It places professionals in an impossible situation where they are expected to carry out an assessment yet, under their code of ethics, there is a particular approach that they must take to be proper in their conduct and ethical.

I apologise to the Chair for delaying.

It is an important topic so I have tried not to be over strict on time. Before Deputy Costello commences, I ask members to indicate their wish to speak now.

I thank the witnesses. I am conscious that we have a small number of people in here but behind them is a large number of families and children who have struggled yet were denied services and rely on each other for support. I thank the witnesses for the hard work they have done to support other families and people who are going through the nightmare journey that they have experienced. I appreciate that it is another unfair burden. We have talked about care burnout where not only must they care for their own families, they must now look out for each other's families. While there is strength in that solidarit,y the work being done still takes energy. I thank them for keeping up that work and energy.

I noticed that Mr. Noble shook his head at the idea that the new model met the legal definition of "assessment". Does he think the SOP would stand up in court if they are so far beyond the bounds of the Disability Act? I appreciate that if matters have already begun, he cannot talk about them. Who represents the HSE when it goes to the Circuit Court? Has it brought in outside legal services or is it an inhouse team? If it is an outside legal service then there is a marginal cost that is probably significantly more than the cost of hiring people to do this. Value for money have been the watchwords of the Civil Service for a long time. Such a practice does not seem to be value for money and, when one adds in the emotional cost, it makes no sense whatsoever. I would like to hear the view of the witnesses on those two issues.

Can Mr. Smyth refer briefly to the panel? If not, perhaps he will provide information to us on the weaknesses of the panel recruitment process. I ask for that because I am conscious that that is something which is used in social work. The committee has previously debated social work recruitment and related issues so I am sure there is an overlap.

Mr. Gareth Noble

The Deputy was very observant to see my horror at what was in the SOP. He is right that I have huge difficulties, from a legal perspective, as to whether this is in legal compliance with the Disability Act because, as I said in my presentation, the purpose of the Act is to determine whether a child has a diagnosis and the extent of that diagnosis. Having listened to Mr. Smyth and his colleagues, I do not know how a diagnosis can be achieved in a 90-minute meeting that is very dependent on the questionnaires Ms Comerford and other families have been provided with.

In the absence of a very serious rethink on this matter, High Court challenges are inevitable. Those costly court procedures are unnecessary and can be avoided but they will be necessary to meet the needs of these children. I cannot say what the High Court or any other court will say but it is my view that this will not stand up in court because it cannot be said to be compliance with the Disability Act. Privately, at senior levels of the HSE, there is agreement with my assessment. They know that this is inevitable and I cannot understand why they would go to court about something that everybody privately or publicly might consider to be a real issue.

I cannot comment on the issue of the legal teams who appear for the HSE. I simply do not know the nature of their relationship with the HSE other than to say that when they do come to court they regularly concede that the timeframes are not those mandated by law, which is a cruel trick to play on families. Many families have received a letter saying, "We know we have do this but you are going to be two or three years waiting because of our current capacity and workloads". Yet the Disability Act has made it very clear that the cost of those assessments is not a defence to the non-implementation of limits. That is, again, a very progressive section within the Disability Act that needs to be preserved at all costs.

I thank the witnesses for their evidence and the Chair for facilitating me.

I have some questions that are probably more for Mr. Smyth and Mr. Noble. The ombudsman's report is out of date because when it was published, the HSE had admitted that 554 health and social care professionals, comprising various therapists so vital for children's development, including physiotherapists, psychologists, speech therapists, occupational therapists and so forth, were involved in Covid-19 swabbing and contact tracing. The majority of these staff were involved in swabbing in the community, which could have been carried out by other medical professionals and nurses who had responded to the Be On Call for Ireland initiative but had not been recruited. In my own part of the country, three quarters of the speech and language therapists in counties Roscommon and Galway were involved in contact tracing and testing. Before the lockdown there was a four-year waiting list for access to speech and language therapy and occupational therapy in those counties and I believe they have now increased. What feedback have the witnesses received about the impact of Covid-19 on the delays? Will it compound the problem? What specific measures can be taken? When a preschool child is referred for speech and language services, for example, that support will not be forthcoming until after he or she receives his or her first holy communion, which is an unacceptable situation.

Mr. Mark Smyth

The Deputy raised a number of important points, particularly concerning our speech and language therapy colleagues who, as much as any profession, have been to the fore in contact tracing and the Covid response. Speech and language services were already threadbare but they have been decimated by that. There has been a very slow response, having spoken to the members of various bodies, in terms of redeploying people back to the services.

As the Deputy mentioned, there was a waiting list of four years. Referrals did not stop because people were redeployed to tackle Covid and kept coming. Therapists returned to provide services with lengthier waiting lists than before the pandemic but that is if people are redeployed back to services. This morning when I spoke to colleagues I found out that psychologists, occupational therapists, and speech and language therapists were redeployed to the AON unit to clear backlogs. They, therefore, went from Covid testing and swabbing to clearing the backlog of legacy assessments. They were moved from their disability and primary care teams but sent to do PTA assessments to conclude that the child needed further assessment. Then they have to return to the services they came from, which have lengthier waiting lists, because they could not do the assessments that were required under the new PTA model.

We need a commitment that the clinicians will be put back on the front line to do their jobs and to provide them with additional staff to support them. If we do not provide additional staff on the ground to meet this need, we will no longer have a disability service because staff will burn out and leave. We will be unable to convince them to work in the disability services in the first place. We need to address this now to address the legacy issue. Last week, the ombudsman captured the scenario well when he said: "In this scenario we are not robbing Peter to pay Paul, we are just robbing Peter." We wholly concur with his conclusion.

Can I briefly seek clarification on that? In evidence given to the Joint Committee on Health by the HSE they categorically stated that once those therapy staff were relieved from contact tracing and swabbing they would go back into the front-line services. Are the witnesses saying that has not in fact happened and they have not gone back into the front-line services, as the HSE had stated in evidence given before another Oireachtas committee?

Mr. Mark Smyth

To my knowledge, after speaking to my colleagues this morning, not all of them have returned. Some are still involved in front-line swabbing and contact tracing.

When they have gone back, they have gone back to assessments rather than front-line treatment.

Mr. Mark Smyth

Yes, to my knowledge, that is true.

Is that everything Deputy Naughten?

No. On that issue, this is a further aspect that really needs to be addressed now. HSE representatives who appeared before the Oireachtas Joint Committee on Health stated categorically that staff would be put back into front-line services to deal with the backlogs that had been created and now we find out from evidence given before this committee today that this blatantly is not happening. It is an issue that needs to be taken up in conjunction with the Joint Committee on Health because the HSE is saying one thing to the committees and doing something completely different. It is similar to the actions that are being taken regarding the SOP, a horrendous situation where we have the professionals and Members of Parliament clearly stating that they should not go down a particular avenue and the HSE is then blatantly ignoring that stated policy, which is completely unacceptable and intolerable.

For people's information, the Minister of State will be before the committee next week. I am sure the committee members will be posing that question to her. Senator Flynn is the next speaker.

I was going to make the point that we bring in the Minister with responsibility for children and the Minister of State to address the committee. In the short time I have been a member of the committee, I am conscious of the level of inequality in care for children and we talk about the rights of the child. I very much thank the witnesses for coming in and presenting to us, which is appreciated. It is not they who are at fault. As one of the witnesses said, they are the professionals and hold children’s best interests at the core of what they do. It is hard to understand that a commitment was given that a child would have to wait no longer than three months for an assessment and now they have to get pre-assessed to be assessed, which is just kicking the can down the road. As a Traveller woman who came through primary and second level education with full-blown dyslexia and really struggled for many years, I know the impact having any sort of a learning disability can have on a child in feeling less than the other children in the classroom. I am not an educational professional when it comes to children with special needs. The question I have for the witnesses is what would they like this committee to do as we go forward to address some of the backlog where children’s needs are not being met? If any of the witnesses could answer that question, I would give my support to make happen to the best of my ability. That is my only question. I thank the witnesses for coming in and for their level of work. I stress that as a 30 year old woman who went through the education system with a disability, it has a dramatic impact on one's learning, mental health and everything else that goes with that.

I will ask Ms Comerford and Ms Murphy to respond and then I will pass over to Mr. Noble and Mr. Smyth.

Ms Linda Comerford

I respect this committee being formed. The one thing we do not want is for this to be just another committee or that we speak to more politicians and tell them our frustrations and anger about how our children are being neglected and for that to be heard but then to blow away in the wind. We want TDs and Senators across parties to finally come together and put this issue to bed and put the children first. These children will not stay children; they will become adults. One of my children is an adult with a disability. If the members think children services are bad, it is gets to a whole new level once they turn 18. It is diabolical. All that happens is that all the different struggles are being pushed further and further down the road. When they get older it is so much harder on them and on their families. They are frustrated and Covid definitely impacted; we see how bad the services are. It really has impacted on how much our young people are struggling because, by God, they are struggling. Enough is enough and I know Ms Vanessa Murphy will concur with me on this. We just want to be finally heard, for the parents, the children and the professional bodies to be heard. Positive action with full engagement needs to happen. I do not want to be sitting here in ten years time talking about this. I do not want a point to come in the future, when the members are retired and my son has children - and God forbid one of them has a disability - when he would have to go through the same fight I had. I do not want to see that happen for anybody. We need to put this matter to bed and finally to put children first and provide them with the level of supports they need now in order for them to reach best potential because when they become adults it gets so much worse.

Ms Vanessa Murphy

I would add the HSE needs to be held accountable for all of what is happening here because the children are being failed across the board. As Ms Linda Comerford said, the majority of our group would have young children but dealing with their needs will be pushed down the road. In my circumstances, I ask myself if we cannot change things now what will it be like for my six year old when he becomes an adult. Whatever the cost to the State is now, the cost with be trebled with residential placement. Where are these children to go? If they are not getting early interventions and the help they need now, where will they be in ten years time when they become adults? There are not residential places for all these children who have been left behind and that is where many of these children are headed if they do not get the help they need now.

I hope the Minister with responsibility for children will listen to what both of the witnesses have said. It is very important that parents of children with special needs or disabilities are listened to. I totally agree with what they said. Action is needed and they need to see more action. I thank them for their comments.

Do Mr. Noble or Mr. Smyth want to come in on this matter?

Mr. Gareth Noble

Briefly, Senator Flynn articulated very well what the real challenges are and the longer-term picture if we do not get this right. Early intervention is there for a reason. It is there because it mitigates against difficulties down the line. Certainly from a legal perspective, the rights of young vulnerable adults are even less available than for children under the Disability Act. Picking up on what Senator Flynn, Ms Comerford and Ms Murphy have said, parents who come to see me, often now through Zoom now, are beyond wanting tea and sympathy from decision markers. They want action. One mum recently said to me, it is like they put up the 110 m hurdles along the track, she gets over them and then she looks around the other side of the track and the 110 m hurdles are being put up all over again. We have got to stop that. We must look after our carers. We must empower them to feel that when they go knocking on a door they will be invited in rather than closed off. I see many young people now in adulthood who are struggling. They do not have day centres to attend and respite is an invisible entity and at the more extreme end because their needs were not met at an early stage, we are taking them into wardship and residential centres and so on. Much of this can be avoided if we take early intervention seriously.

Thank you, Mr. Noble. Does Mr. Smyth want to add anything to that?

Mr. Mark Smyth

Yes. In terms of what we would be asking the committee to do, we would be asking for support for an immediate cessation of the SOP because, as we said, it will not meet children’s needs and will only exacerbate the existing problem. We were dismayed that the 2018 heath committee recommendations were largely ignored from our point of view. What we really do not want to see is that the work of this 2020 committee will be similarly ignored because otherwise it will be a number of years down the line before this is addressed.. That is why we want parents’ voices not just to be heard but acted on. We do not need more talking shops.

Parents are exhausted. We need to be their voice and advocate for them in order that they will not have to fight. To echo what Ms Murphy said, we do not want to end up with children being put in residential care. That is expensive and ineffective. We know that early intervention works, that it is cost effective and that it is evidence based. We need to be doing it - not waiting around - and trying to rectify the mistakes. Something else I would like to see, which is an aspiration but one the children of Ireland deserve, given that this comes from a rights-based perspective, is children having a right to intervention, not just assessment. Assessment identifies need. It is heartbreaking for a parent who has fought to get their child's needs identified to then have to start another fight for help to meet these needs. We need to ensure, as my colleague, Mr. Allen, said, that assessment and intervention flow from one to other because assessment has to have intervention, for both the children and their families.

I thank the witnesses for taking time to attend. It is a very important session, so that is much appreciated. My questions are for Mr. Noble in regard to the new model of assessing children. If he were Minister, what would he identify as the unnecessary obstacles and barriers that need to be removed immediately? What are the key changes that should be implemented, possibly with less effort than others? What key priorities does he identify within the service statement he mentioned in his opening statement to meet the needs of a child-centred approach? How would that be implemented in terms of HSE diagnostics, intervention, recruitment of personnel and possibly the funding model which goes with that?

Mr. Gareth Noble

I often find it strange how little we hear from the HSE about wanting additional funding to meet its obligations under the Disability Act for recruitment and so on. I recall being involved in one case a number of summers ago where it took longer than the six-month timeframe for a complaint to be heard. In that case, the HSE's solution to the backlogs was not to call for more recruitment of speech and language therapists, OTs, physiotherapists or psychologists. Instead, much to the bewilderment of the court, its priority was to beef up the complaints system and recruit more complaints officers to deal with it. We were going to go from having one national complaints officer, based in Naas, County Kildare, to three or four. That was the solution and it demonstrated where the priorities were and the lack of will to deliver in that regard.

I am asking the HSE to do no more than comply with the law. The law states that its assessments must be commenced within three months and must be determined no later than three months from the commencement. We know, however, that 91% of assessments are not conducted within that timeframe. In addition, in terms of service provision, before coming to this meeting I lodged nine complaints on behalf of families, all going back into the system to try to progress assessments or service delivery. We were dealing with service statements where we were told that the assessments referred to non-verbal children requiring urgent interventions as soon as possible. All these phrases were littered throughout the assessments, yet the service statement today suggested that the earliest day by which these children will be seen for those key interventions is August 2022. That is an unacceptable dereliction of duty and an unacceptable breach of a duty of care.

There is going to be a further cost in this regard. In a High Court case of 2007, Mr. Justice Peart found that four months was an unacceptable period in the life of a two-year-old and the context of early intervention. He said valuable time was being wasted. In the context of a four-month delay, which by the time the child was being assessed had increased to four months, he ordered that child and their parents to be awarded €50,000 in damages. It is crazy that parents would ever have to countenance coming to the likes of me to have basic rights vindicated. I would love nothing more than for my role to be made redundant. The way to make my role redundant is simply to comply with the law.

It is astonishing for the committee to hear about the real-life experiences being dealt with in the courts. In my constituency of Mayo, the demand for speech and language and occupational therapists is enormous. Do we get value for money by throwing money at it? Can we recruit the specialists to meet the significant demand from families and parents? Do we have a response to this in any way? Can a solution be found? What are Mr. Smyth's thoughts on the matter?

Mr. Mark Smyth

The argument the HSE puts forward is that it is not about the resources but about using them better. However,the resources have to be there in order for them to be used better. We have speech and language and occupational therapists and psychologists who have the requisite skill and expertise to provide these services, but we need a new system of recruitment to get them in place in order that the right person is in the right job at the right time. As I said earlier, I can provide a copy of that report on recruitment to the committee for members' perusal. We know the process does not work, and we have been saying for ten years that we need to be listened to in order that we can get these people in place and ensure that children have their needs met.

Mr. Odhrán Allen

I disagree with the idea that money has been thrown at the problem. There has been underinvestment in health and social care professional services for many years. We understand the financial difficulties and the challenges within which the HSE is operating, and the impact of the recession ten years ago, but there has been historic, chronic under-resourcing of health and social care professional services and that needs to be addressed.

Ms Linda Comerford

One matter that we have not addressed is that there are two waiting lists for assessments of needs. One relates to the assessment, while the other requires that the service statement be reviewed no later than 12 months after it is drawn up, reviewed or amended. Many families, including mine as well as others the length and breadth of the country, seldom get a review or, if they do, there is a loophole as to why it cannot be done. The child might have seen one person once who amended the statement, which means the review can then be dragged out for another 12 months. Every step of the way, one has to fight. Even in that 12 months, the child may not have received any services, so chances are that he or she will have regressed in one area or another. What is a priority for a child this year might be different from what it is for him or her next year. Their needs are forever changing and I see that with my own kids.

Mr. Gareth Noble

To add to that, families have often come to me about this issue. As a result of the way the models are configured, preschool children are dealt with by the early intervention team and are then transferred to the school-age team lists. For many parents, however, their children are never seen by the early intervention team before they age out. In addition to what Ms Comerford said about other lists, children must then join another waiting list for the school-age team, which relates to those over the age of six. Multiple lists are in play in this regard.

Ms Comerford made a good point about the review process. At the bottom of every assessment of need it is stated that the assessment is to be reviewed on X date. This is mostly ten months after the date of assessment. I have never once heard of a parent being contacted by the HSE liaison officer on the day the child was to be reviewed to invite them in for a review. It is only when the HSE is asked, and then the parent has to justify what further assessments might be needed. There is an old phrase "A week is a long time in politics", but it is a long time in the life of a young person and it is even longer when he or she has received no services through that 12-month period.

I was not going to talk at all because I am so angry. I am angry with the HSE and because Ms Comerford and Ms Murphy have had to go through this. There are parents who are still going through this and who will go through this for years to come.

It does not make any difference whether we throw money at it and how much money we throw at it, we seem to not have the clinicians to deal with it.

As a public representative, many parents have come to me over the years who needed their children assessed. One would ring the HSE and try to get in touch with the HSE to get appointments or one would ring Enable Ireland and do whatever one could to get the child an appointment as quickly as possible. To my embarrassment, sometimes, I have had to talk to parents whose children have not been getting the services they should have been and I have told them it might be time for them to walk away. Imagine having to say that to a parent. I have been in tears with parents over the years when they could not cope with their children any more because they have not been supported in caring for the child. Not getting the care for the child leads to the child going into residential care. There was no other choice but to tell the parents that to get the services they need they may have to walk away and let Tusla come in - and they will get every service under the sun then. I have had to do that with parents with a very heavy heart.

What is happening to our children today is shameful. I am a parent. I have children and foster children but I am in shock at what I am hearing today. There will be cases down the line where we have failed and where the HSE has failed the children of this State. What will be done about recruiting these clinicians? I feel that Mr. Noble should be where the HSE is. He is in the wrong job and should be over where Mr. Smyth is.

Mr. Smyth does not work for the HSE.

I apologise, I meant Mr. Noble has a better understanding of what is needed within the HSE to deal with the inadequacies in the existing services. I am grateful to those carers and mothers and fathers who have been going through the toughest of times trying to have their voices heard and being a voice for other parents who are not strong enough to shout for their child. I thank Ms Comerford and Ms Murphy for being the voices of those parents. As a politician, I am completely ashamed. While I do everything I can, it is difficult when one is up against the system we have today.

Does Mr. Smyth or Mr. Noble want to come in on any of those points?

Mr. Mark Smyth

I am happy to come in. I thank Senator Keogan. Working on mental health on the ground over the years, it has been heartbreaking, personally and professionally, to have parents in front of me. I have had parents who had late diagnoses and who had to act as parents, carers and prison officers at times because of the risks their children were dealing with. These parents were beaten down by the system. As the Senator eloquently put it, these are the parents who have the energy to fight. Many parents do not have that energy any more and it is wrong. We have a broken system and what is being put in place will not fix that system. It will make it worse. I have encountered parents who have loved and still love their children with everything they have but have said they could do no more. As the Senator has described, they let Tusla take them because they just cannot do it. We have had parents whose mental health has been impacted. They have given up their jobs and risked losing their houses because they love their children and fight for them. They should not have to fight. We have clinicians on the ground who are hearing these stories and are powerless to do anything about it. I agree that we need more staff but we need the staff to come into a system that is evidence-based, rather than throwing money and staff into a system that does not meet children's needs.

Does Mr. Noble want to do add anything?

Mr. Gareth Noble

No. The exchange is fascinating just to sit here and listen. I am pleased to see how well-informed the committee members are. That reflects their experience with constituents and others they have worked with. I implore them to bottle that drive, energy and determination to work on a cross-party basis to ensure the Ombudsman for Children's report does not gather dust on a shelf.

Ms Linda Comerford

We used a lot of words today but I want the Deputies and Senators here today to go away and remember some of them: fight, burnout, tired, failed. This is 2020 and these are our vulnerable children and adults with disabilities today. That is shameful and if the members do not remember any other words from today, they should remember those and use them to keep fighting. This really has to change. I do not want any parent to go through what we have gone through. We get calls and messages every day. It is hard but one keeps going. Some parents are sleep deprived because their children do not sleep. We could be chatting at 5 a.m. and we have not gone to bed because our kids have not gone to bed. We have to fight because, if we do not fight for our children, who will do it for us? That is why we are here. We want, once and for all, positive change and for our children to matter in this country.

I thank the witnesses. For them to be the voices of those children is important and we will take on board what they are saying.

In response to Mr. Smyth, a simple temporary solution would be for the cessation of the standard operating procedures. Mr. Smyth obviously has serious concerns. The required consultation has not happened, either with Mr. Smyth's organisation or with the parents, to ensure reforms are made that will meet the needs of the children. I am prepared to make that call to the Minister and it would give that bit of breathing space to allow a better system to be put in place.

On the new system coming out, Mr. Smyth's statement noted that his organisation's "members have reported that since the implementation of the PTA this month, the outcome in almost all cases [to date] has been a recommendation for further assessment." Can he give a percentage on that? What percentage is essentially kicking the can down the road and putting further delays on these children?

Mr. Mark Smyth

I do not have national data that have been shared with us, so I just have anecdotes from clinicians on the ground. One community healthcare organisation, CHO, completed 26 PTAs in two weeks and all 26 were referred on for further assessment. My impression from my speech and language and occupational therapy colleagues is that this will be a consistent outcome. Clinicians will not put their careers or professional standards on the line to make a determination of disability in 90 minutes and give a false sense of what a child's needs are or will not indicate what their needs are based on 90 minutes. My expectation is that this will continue to occur and place a further burden on our creaking system.

At this stage, I think all the questions have been asked. Like many other Deputies and Senators, I deal with this topic regularly in my constituency. The committee feels passionate about the issue and wanted to examine it as one of our first topics but we do not want to be part of a report that sits on a shelf gathering dust. I do not want to be the Chair of a committee that oversees anything like that. It was fantastic that we had these presentations today in advance of our meeting with the Minister of State because we can directly put those issues, concerns and questions to her and we will have further engagement in the new year. Then we can meet as a committee about some of the suggestions that were made, such as the cross-party motion. The good thing about this committee is that it is cross-party. All parties, as well as Independents, are represented.

It is the appropriate forum in a way to try to get that cross-party approach that everybody wants to see.

I sincerely thank the witnesses. The testimony of Ms Murphy and Ms Comerford was powerful. I know they are tired and that it is a battle and a struggle but we really appreciate them giving up their time and coming before the committee today and telling us their stories. When I speak about this topic I always say people should not have to tell their stories to their local Deputy or anybody, and the system should not be like that, but we appreciate being able to hear first hand from people exactly what they are going through so that, hopefully, we can use it to help fight the battle alongside them. I thank Mr. Noble, Mr. Smyth and the other witnesses. We really appreciate it. As I said, we will continue with this topic next week, when we will have engagement with the Minister of State, Deputy Anne Rabbitte. We will possibly consider it again in the new year. My sincere thanks to everybody for coming today. We genuinely appreciate it and we will be staying on top of this topic.

I propose we publish the opening statements to the Oireachtas website. Is that agreed? Agreed. I remind everyone to vacate the room immediately to allow for cleaning and set-up of the next meeting.

The joint committee adjourned at 2.40 p.m. until 4 p.m. on Tuesday, 15 December 2020.