Oireachtas Joint and Select Committees
Tuesday, 2 March 2021
Joint Oireachtas Committee on Children and Youth Affairs
Children's Unmet Needs: Engagement with Health Service Executive
We have received apologies from Deputy Phelan and Senator Ruane.
Before we begin, I remind members who are participating remotely to keep their devices on mute until they are invited to speak. When committee members are speaking, I would ask that, where possible, they have their cameras switched on. I also ask them to be mindful that we are in public session.
I also remind members of the constitutional requirements that members must be physically present within the confines of the place where Parliament has chosen to sit, namely, Leinster House, in order to participate in public meetings. I will not permit members to participate where they are not adhering to this constitutional requirement and, therefore, any member who attempts to participate in this meeting from outside the precincts will be refused.
Our agenda item for today is consideration of the Ombudsman for Children report entitled Unmet Needs with officials from the HSE. We have had two meetings previously so this will be our third meeting on this report. The officials joining us today are in attendance in an additional meeting room within the precincts of Leinster House. They are: Dr. Cathal Morgan, head of operations with disability services; Ms Angela O'Neill, national disability specialist with lead responsibility for assessment of need; Ms Breda Crehan-Roche, chief officer for community healthcare organisation area 2; and Professor Malcolm MacLachlan, clinical lead of the national clinical programme for people with disability. I welcome our witnesses.
Before I call on Dr. Morgan to deliver his opening statement, I need to advise the witnesses of the following matters relating to parliamentary privilege. They are protected by absolute privilege in respect of the presentations they make to the committee. This means that they have an absolute defence against any defamation action for anything they say at the meeting. However, they are expected not to abuse this privilege and it is my duty as Chair to ensure that this privilege is not abused. Therefore, if the statements of witnesses are potentially defamatory to an identifiable person or entity, they will be directed to discontinue their remarks. It is imperative that they comply with any such direction.
The purpose of our meeting is to discuss with the witnesses the issues identified in the report which was published in October 2020 by the Ombudsman for Children, Dr. Niall Muldoon, entitled Unmet Needs. The report identifies serious shortcomings in how assessments of the needs of children are now conducted. I also want to take the opportunity to remind members that, when putting their questions to the officials, they should adhere to the agenda items scheduled for discussion at this meeting.
I advise everybody that the format of the meeting will include an opening statement from Dr. Cathal Morgan, followed by questions and answers. Each committee member has seven minutes, including the answers to his or her questions, so I urge our witnesses and questioners to bear that in mind. Members can start indicating their desire for speaking time as soon as possible.
I call on Dr. Morgan to deliver his opening statement. It will be followed by questions and answers. Dr. Morgan is very welcome.
Dr. Cathal Morgan:
I thank the Chairperson and members of the committee for the invitation to attend this meeting to address matters relating to the report by the Ombudsman for Children entitled Unmet Needs, with regard to assessments of need under the Disability Act 2005. I am joined today by my colleagues: Professor Malcolm MacLachlan, clinical lead for people with disabilities; Ms Breda Crehan-Roche, chief officer, community healthcare organisation west; and Ms Angela O’Neill, national disability specialist, community operations.
The ombudsman’s report was published following extensive engagement by the Ombudsman for Children's office, OCO, with a wide range of stakeholders. The HSE met with investigators in the OCO and provided significant levels of information to support the development of this report which emphasises the need for early intervention for children with disabilities as well as the requirement for additional resources to meet the demand for assessment of need.
The OCO makes a number of recommendations with regard to the needs of children and young people with disabilities. The HSE particularly welcomes the recommended review of Part 2 of the Disability Act 2005 and the relevant sections of the Education for Persons with Special Educational Needs, EPSEN, Act. The OCO identified a number of issues of concern with regard to the Act and the HSE agrees with this position and is committed to actively participating in any review of current legislation. It is our firm belief that addressing compliance with the Disability Act and the obvious challenges posed by the assessment of need process must be considered within the context of a wider reform programme for children and young people’s disability services. While acknowledging the very significant level of resources allocated to disability service provision, which was approximately €2.2 billion in 2021, planned multiannual investment coupled with reform of the sector is necessary in order to build and strengthen early intervention and the provision of family-centred supports.
In terms of reform specific to services for children and young people with complex disability support needs, the HSE and our voluntary agency partners are committed through the progressing disability services programme to reconfiguring services to children’s disability network teams. These teams will provide interdisciplinary, child and family-centred services for children based on their presenting needs rather than their diagnosis, a key concern referenced in the ombudsman's report.
The HSE and our lead agency partners are working hard to ensure that all children’s disability services fully reconfigure to these network teams during the first and second quarters of 2021. This change will ensure that children have access to early intervention rather than waiting long periods for diagnostic assessments and potentially ageing out of services before they access intervention. While the HSE acknowledges that some education services continue to request a diagnosis, we fully support the recommendation of the OCO that the access criteria for such services should be reviewed and that a clear pathway based on need is required.
Since 2019, substantial additional resources have been allocated towards children’s disability services with a particular focus on assessment of need. For example, a total of 100 additional therapy posts were allocated in 2019 and targeted specifically towards assessment of need. In 2020, €7.8 million was allocated through the Sláintecare healthcare reform initiative to facilitate the HSE to address the backlog of overdue assessments, thereby supporting these children's network teams being established to prioritise intervention having cleared the backlog of overdue assessments in each community healthcare organisation, CHO. Furthermore, the HSE national service plan for 2021 allocated 100 additional posts to the new children's disability network teams.
Although additional resources are very welcome, we are aware the absence of the progressive disability services reform programme and changes in the assessment of need system will limit the opportunity for those resources to have real impact on the lives of children and young people with disabilities. An internal HSE review of the practice of implementation of Part 2 of the Act in 2016 confirmed anecdotal evidence that the approach to assessment of need was not consistent across the country. It was apparent that practice varied widely across the nine community health organisation areas, as well as within CHO areas. Although a range of guidance notes relating to the assessment of need processes were issued as far back as 2007, there was no nationally standardised or agreed operational approach or definition of an assessment of need.
In an effort to standardise procedures and facilitate timely assessments, the HSE developed a standard operating procedure, SOP, for assessments of need. The SOP was implemented for all assessment of need applications from January 2020. Assessment of need now comprises a preliminary team assessment that will determine a child’s needs and will identify initial interventions that will be required to meet these needs. The HSE respects the important principle that clinicians undertaking assessments of need should use their clinical judgment in carrying out these assessments based on the presenting needs of the child. However, it is critical to note that the practice of targeting resources exclusively towards assessments, sometimes taking up to 100 hours or more, is not the optimum use of valuable specialist resources. Relevant to this area, the HSE has established a new national clinical programme for people with disabilities, which is supporting clinicians in carrying out their work and directly involves people with lived experience in the design of clinical assessment and interventions. Related to this important development in the health sector, efforts are under way in terms of assessment of autism spectrum disorder, which now forms part of a dedicated service improvement programme aimed at developing supports and services for the autistic community.
These reforms are intended to alleviate the current situation whereby children in some parts of the country may wait a significant length of time before they can access an assessment. During this waiting period, they often have little or no access to intervention or support. This is unacceptable. The changes in the standard operating procedure, and particularly the new assessment format, will facilitate children with disabilities to access assessment in a more timely fashion. In essence, timely assessment along with ongoing intervention based on presenting need is a central principle guiding our work.
In conclusion, health policy, particularly the progressing disability services, PDS, project, has supported a move towards the provision of services based on need rather than diagnosis. This aligns with the UN Convention on the Rights of Persons with Disabilities. The HSE is committed to ensuring that children and young people with disabilities access equitable and timely intervention based on need rather than diagnosis. The Disability Act 2005 in its current format can create barriers in this regard as a result of its focus on assessment rather than intervention. Our priority is to ensure that people with disabilities can access both.
I thank the Chairman. I am in my office in Leinster House. I thank Dr. Morgan and his team for appearing before the committee. It is important for them to appear and this is my first time to meet them. I welcome the actions outlined by Dr. Morgan. All present know that early diagnosis is essential for children in particular, but also for their families. It concerns me that the overview of a report on the website of the National Disability Authority states:
People with disabilities are the neglected citizens of Ireland. On the eve of the 21st century, many of them suffer intolerable conditions because of outdated social and economic policies....
That is a concern for me.
Although I welcome the €7.8 million that has been provided to clear the backlog, the preliminary team assessment seems to me to be almost like a box-ticking exercise. I do not believe it is providing children with the help they need to access supports.What exactly is it doing to provide supports to meet children's needs? It takes 90 minutes to assess a child. I have significant concerns about that, as well as about the fact that thousands of children have been waiting for years for assessment. All members of the committee know of these issues by virtue of the number of families in the areas we represent who are waiting for assessments and have contacted us. Many of them may choose to go private. I ask Dr. Morgan to respond on that point because I have real concerns in this regard.
Dr. Cathal Morgan:
I will address the Deputy's question briefly and then pass to Ms O'Neill, who will explain exactly what the preliminary team assessment is. First, in terms of the reference made by the Deputy to the National Disability Authority, we are significantly concerned with regard to ensuring we meet the requirements of the UN Convention on the Rights of Persons with Disabilities. Any fair analysis will show that a fairly substantial level of resources is being put in with regard to supports and services for children and adults with disabilities, with a record level of investment this year of €2.2 billion.
I mentioned in my opening statement that we have made available a significant level of new therapy resources. More is absolutely needed, but it is needed in the context of reform. The preliminary team assessment and the standard operating procedure are absolutely not about just meeting the conditions within the Act. In other words, there are certain timeframes that must be met but it gives primacy to intervention. If it is acceptable to the Chairman, I will ask Ms O'Neill to provide a quick overview of what the assessment is and some examples of where it is working really well in community healthcare organisations.
Ms Angela O'Neill:
I thank the Chairman. To give the Deputy an overview of the concept of the preliminary team assessment, as Dr. Morgan stated, the Disability Act provides significant detail in terms of timeframes for assessment. The associated regulations contain quite comprehensive detail in terms of our legal obligations. What the Disability Act did not do is it did not define what an assessment of need should look like. As members will be aware, what the Disability Act confers on people is an entitlement to have an assessment of need. There is no associated entitlement to intervention. What has evolved in recent years is that the focus has become exclusively on assessment and children are waiting very significant periods. As the Deputy stated, some children wait several years for an assessment of need and then find that they go onto another very lengthy waiting list for intervention. I can think of an example of a little boy of 18 months who was referred for an assessment of need in the context of a diagnostic autism spectrum disorder, ASD, assessment. As he was waiting for a diagnostic ASD assessment, he was not able to access other services.
When he got his diagnostic assessment three years later, it was found that he did not have ASD. That child therefore missed out on accessing any interventions in that three-year period.
We want to ensure with the standard operating procedure that children get a streamlined assessment within the timelines of the Disability Act 2005 and then go on to an intervention pathway immediately. A little child like the one to whom I referred would have been seen and had his assessment commenced within three months, completed within another three months and he would have been on an intervention pathway on which the ASD diagnostic assessment would have evolved over time. He would have had a period of diagnostic intervention rather than losing a three-year period while he was on a waiting list. Our goal with this new procedure is to ensure that children are seen for a quick assessment but are also placed on an intervention pathway as quickly as possible.
I thank Ms O'Neill. It is important that all groups work together. I read this week that the chief strategy officer of the Association of Occupational Therapists of Ireland, AOTI, Mr. Odhrán Allen, has stated "The PTA is the direct opposite of what is intended by the Disability Act, 2005." I think we should all be working together. These assessments are crucial for children and as Ms O'Neill stated, time is of the essence in this process. I have concerns about what the outcome of this new process will be. While I welcome the €7.8 million in funding, perhaps we can revisit this situation in a few months' time and find out exactly what has been achieved, how many cases have been worked on and what progress has been made. I ask whether we could have a roadmap in this context, as that would be important.
Turning to the issue of staffing, when people contact my office about the status of assessments I then ring around for information to see what it is possible to do to help get a child assessed faster. Ms O'Neill is aware of the lists and knows the situation and that is why this new procedure has been established. On funding for staffing, how much of the €7.8 million will be used for extra staffing? I ask this question because the whole situation boils down to delays in the process. While I understand the impact of Covid-19 has obviously played a large part in the situation now, what kind of money is being allocated to staffing?
I ask Dr. Morgan to come back in at the end to respond to those questions because the seven minutes are up. I will give some time at the end for Dr. Morgan to do a wrap-up regarding those questions he cannot deal with now. I call Deputy Dillon and ask him to confirm his location.
I confirm that I am in the precincts of Leinster House. I welcome our witnesses and thank them for their time today. I acknowledge the hard work they have done within their profession in the past few months. I also welcome Ms Crehan-Roche, with whom I am familiar and who is doing a fantastic job within the community healthcare west organisation.
My first question concerns the focus on the assessment of needs criteria, which meets the legal requirements and obligations of the HSE. I refer to the allocation of an additional 100 posts in 2019. Some CHOs were rewarded with additional posts to clear the backlog of assessments of needs, while others CHOs were penalised. I am talking in particular about community healthcare west, which is probably one of the highest achieving CHOs in respect of meeting the requirements. The HSE rewarded inefficiencies with additional posts. Has this situation been reviewed in the context of the service plan for 2021? I am not sure to whom to direct this question.
Dr. Cathal Morgan:
That is fine, I will speak on those questions, if that is okay. The specific allocation this year takes two aspects into account. One concerns population health and need, while the second is what we call performance-related merit. It is based on the extent to which our CHOs and service providers meet the targets required under the Act. The allocation of resources will have absolute regard to that aspect. That is what is going to be done this year.
In previous years, such as last year when we had 100 additional posts, we did have regard to the census of staff in disability services, including physiotherapists, speech and language therapists, SLTs, psychology grade staff etc., to determine the quantum of posts being delivered. This year, however, regard is being given to population health in each of the nine CHOs and it is also performance-related.
On the subject of diagnostics and interventions required, this question may be one for Ms Crehan-Roche to answer. On the allocation of resources and posts within the service plan, are we really investing in the areas that we need to invest in regarding dietetics, SLT and feeding, eating, drinking and swallowing difficulties, FEDS, and in other areas? I am not differentiating in this regard in respect of the primary care elements. We see major investment in that area and that is required in the area of earlier diagnostics and avoiding people having to be admitted to our acute hospitals.
Disability, however, seems to be lacking the requisite focus and priority regarding investment. I mean real investment. Some of the milder developmental issues assessed are sent to primary care centres and assessed in that instance. For more complex issues though, we do not seem to have the resources available and we have longer waiting lists. That is where I feel the real challenges are. Will Ms Crehan-Roche please shed some light on that situation?
Ms Breda Crehan-Roche:
I would be delighted to do so. I am delighted to say that we will have all assessments of need in community healthcare west completed by the end of this month. The Deputy is quite right that we were one of the more productive CHOs. The major emphasis now is on intervention. That is the important element. We will have all of our children's disability network teams in situby the end of quarter two of this year, and that is where all the interventions happens. We are fortunate to have received and we welcome the additional money we will be getting this year for posts in community healthcare west. We will be deciding where those posts will go, and that will again be based on the mapping and the census of staff.
We obviously take our responsibilities very seriously and we work very closely across the care groups. The primary care and disability areas work very closely. The Deputy has quite rightly mentioned dietetics as one area that will require intervention. We are working with people with complex cases on FEDS programmes and we will be investing in that area and trying to see what we can do within the resources we have available.
We are therefore working very closely with our colleagues across the HSE, but also with the non-statutory section 38 and 39 organisations. Examples include the Western Care Association, the Brothers of Charity, Ability West etc.. We work closely across the services and our major emphasis is on intervention and ensuring that everything we do is child and family centred and that children receive the services they require based on their needs. That is being reviewed continuously.
Turning to accountability and tracking progress within the disability areas in the different CHOs, as public representatives we use tools such as parliamentary questions etc.. Are there other ways, such as quarterly reports, for example, in which we can get some kind of transparency and accountability regarding progress being made in these areas?
I am on the Leinster House campus. I will ask my questions at the start and I will leave time at the end for the witnesses to respond. I thank the witnesses for attending today's meeting and for making a presentation to the committee. I had a number of conversations with people who are directly affected by the standard operating procedure and their children's needs not being met. I will raise some of the cases and I would be grateful if the witnesses could respond to them.
I have serious concerns about the replacement of the assessment of need with the new tool, the standard operating procedure, as it does not increase the speed at which children can access meaningful intervention. It only serves to move them from one waiting list to another and there is no statutory time limit for the second list and therefore little recourse. The Ombudsman for Children stated to the committee that it was like an old-fashioned three-card trick, moving children from one list to another without getting the developmental treatment they require. These concerns have been raised by parents and professionals alike. A parent from Enough is Enough stated to the committee that parents are terrified of their requirement under the standard operating procedure. It could mean that they could miss something in their child's development that could hinder them accessing services going forward. Parents are under enough pressure already. As they said at the committee meeting, they are not therapists themselves. What is the role of parents in the new process and what supports, if any, will parents be given? It was raised directly with me that while the HSE talks about reducing the waiting lists that the standard operating procedure is just a box-ticking exercise, as was mentioned earlier. Therapists involved in providing assessments of need have vigorously and repeatedly opposed the changes and have stated that they will harm children, yet the HSE has proceeded with them regardless. The Psychological Society of Ireland, the Association of Occupational Therapists of Ireland and the Irish Association of Speech & Language Therapists have stated their clearly articulated concerns that the SOP does not address the recommendations of the Oireachtas Joint Committee on Health. Is the purpose of the changes to reduce the HSE's legal liability due to breaches of the statutory obligation to assess children in a timely manner?
I was informed in response to a parliamentary question I asked in the Dáil that the HSE has spent more than €700,000 in defending the State in its failure to provide assessments of need in a timely manner under the Disability Act. That money could and should be spent on providing the service the children need instead of defending the indefensible. Why is the HSE defending the indefensible?
In the North, for example in Derry, children identified as having developmental needs are seen by their local intervention team, which includes healthcare and therapy staff, within eight to ten weeks of a referral. If they are deemed to require an assessment, for example, for autism, this assessment is available within another eight to 12 weeks but, crucially, the child is provided with the intervention in the interim. That is the main requirement. Has the HSE considered that approach as a model of treatment?
If a child gets an assessment of need in this State, the problems are only beginning. I recently received three responses from the HSE, which I will read out but I will not identify the children. Connor, aged seven, was transferred to the school age team from the early intervention team. The current wait for these services is 40 months. Tyler was referred to the school age team and was placed on the waiting list for early intervention. The current wait for the multidisciplinary team is 40 months and the HSE will not offer him a service until 2023. Luke, aged five, was referred to the early intervention team. If Luke turns six while he is waiting on services, he will be transferred to a school age team. The current wait is 40 months and it is estimated that Luke will be offered these services in May 2024.
One can understand the concerns of parents given what has been said by the witnesses today. I welcome some of the initiatives that were outlined. However, it is only white noise to them. They are not getting the treatment their children need when they need it. These are more examples of moving children from one list to another without getting the service they need.
In recent weeks the committee discussed the abuse parents and children received in the mother and baby homes. It was said to me that the State could be complicit in the systemic abuse of children by failing its statutory obligation to provide them with the timely treatment they need in order to reach their developmental milestones. I will leave it at that.
Dr. Cathal Morgan:
I will. I thank Deputy Ward. I will share the response with my colleague, Professor MacLachlan, because there are some clinical related matters that I would like to have addressed. First, the very reason we endorsed the ombudsman’s report and introduced these reforms such as the progressive disability services is precisely to do what he has quite rightly referred to, which is, that we must intervene quickly to carry out assessments but we must intervene. Intervention is really the most important thing. The standard operating procedure, the setting up of the new interdisciplinary network teams and the additional resources that were given to the teams – another €6 million was provided for a round of new therapy posts this year alone, on top of what we have put in already, and there are more to come – is precisely to move to a scenario where rapid assessment and intervention takes place but the primacy must be on intervention. We have looked at other models as well. Professor MacLachlan will address this, as we have established a new national clinical programme specifically for disabilities.
I have two points to make regarding the resources that are expended through the legal channels. One is that it is important to recognise that people have an entitlement to go to the courts for redress. That is an important element of our legal infrastructure. Of course, I much prefer to spend the resources on delivering intervention. I always say that, and my colleagues say it, but when a case is taken we have to enter into the process, but we want to avoid that as much inasmuch as we can.
On the parental involvement in the process, as I referenced in my opening statement, in progressive disability services our model now is much more about child and family-centred practice where interdisciplinary teams will work with parents or carers alongside the children so that it becomes a genuine plan of intervention not just for the child but also for the parents concerned. That is why we are trying to emphasise the need to shift reform away from silo-driven interventions by singular disciplines to one of an interdisciplinary response.
I respect where the Deputy is coming from, from the point of view of the concerns by the professional bodies, which is to be respected. Professor MacLachlan will address this now. It is fundamentally important to keep in mind two things: one is that we have done a lot of work with clinicians doing the work on the ground. That is really important as they are delivering the interventions. Professor MacLachlan will refer to them in the context of his work as a national clinical lead. I will ask him to come in on that.
Professor Malcolm MacLachlan:
I thank Deputy Ward for his questions. I will start towards the end. I think there really would be a concern that the State was being complicit in providing poor treatment had we not introduced the standard operating procedure. As the Deputy is aware, there were lengthy waiting lists and they have dramatically reduced. I think that is a very important positive action that we have taken. The national clinical programme for people with disabilities has been set up specifically to implement the UN Convention on the Rights of Persons with Disabilities and to make it focus in particular on the needs of people with disabilities from an intervention perspective. Of course, we all appreciate that assessment is important, but it is done for a purpose. As Deputy Ward said, what people need is an intervention, even if it is only in the interim while they wait for a fuller assessment to take place. Assessment is not a one-off process. One does an assessment that indicates a potential intervention, one provides that intervention and that intervention in itself is a form of assessment and is a continuing process.
The standard operating procedure has been specifically introduced to prioritise the importance of intervention, to have it informed by prior assessment but not to have the unfortunate situation we had before, where people were on waiting lists for a long time for an assessment and then in some cases waiting four or five years for an intervention following the assessment. We could not stand over that and that is why it has been so important to develop a standard operating procedure that is effective, efficient and even more important, is equitable, in order that we do not have huge variations across the country in terms of access to interventions.
I am in the 1932 annexe to Leinster House, the little-known annexe at the back of the building. I thank the witnesses for coming before us. I will put my questions to the witnesses in a rapid-fire way. The questions are short, and I hope to get short answers as I only have seven minutes.
Has there been a discussion internally on the ethical basis on which the SOP has been devised and has anybody within the HSE or academia raised issues about it? My first question is for Dr. Morgan.
Professor Malcolm MacLachlan:
To be honest, this whole area is an ethical area. One of the ways in which people often talk about this is through clinical risk. I have heard some commentary about the clinical risk that is involved or mitigated through very lengthy assessments. As I stated previously, one of the issues in having extremely lengthy assessments and then long waiting lists for interventions is that it ignores the clinical risk that is involved in not intervening. If one looks at Articles 25 and 26 of the UN Convention on the Rights of Persons with Disabilities, they really emphasise the importance of rapid intervention. The ethical issue is not alone about assessment, it is about timely intervention and intervention that is appropriate to the needs of the person as soon as possible. As several speakers have said, early intervention is primary. That is how I would look at the ethical element of it.
So how would the witnesses characterise the statement that this new SOP is merely a defensive process for legal reasons? Perhaps Dr. Morgan might want to take that question. The implication is that the system was devised using approximately €7.8 million purely for legal reasons to offset the risk of legal action against the HSE downstream.
Dr. Cathal Morgan:
The SOP needs to be understood in the context of the wider reform initiative we are implementing. I do not regard it as a defensive approach. I regard it as a mechanism by which we meet the law of the land. There are legal requirements for the State on assessment of need. However, in policy terms, if one looks at progressive disability services, in the UN convention that Professor MacLachlan referenced, assessment in and of itself without an interdisciplinary intervention programme is meaningless. As Deputy Ward outlined, parents are waiting and crying out for intervention. The additional resources to clear the backlog allow the network teams that are being set up as we speak and that will be fully in place by the end of this quarter, quarter 2. They are about timely intervention and making sure at the same time that we meet the conditions of our legislative requirements.
We have said in the response to the OCO's report that we do welcome the review requirements.
I accept the answer. Regarding community child and adolescent mental health services, CAMHS, and the setting up of interdisciplinary teams, I tabled Parliamentary Question No. 151 of 2 December 2020 asking the Minister for Health for the reasons for the delay in all interventions for children under the age of 18 years of age. The subsequent HSE response to me of 17 December was that in respect of community CAMHS services, the waiting times for young people to be seen by the child and adolescent mental health services continue to be an issue in a number of CHOs. It stated that a renewed focus on improving capacity and throughput was in place in this area and some improvement was being shown. I cannot say that is the case in CHO 4.
Dr. Morgan spoke about silos previously. In the very short time available, if we are talking about knocking down silos, then CAMHS needs to be put under the microscope. He can correct me if I am wrong, but my perception is that CAMHS operates as a silo and until that silo is smashed and there is a greater interdisciplinarity about the way in which teams operate at a community level then we are not going to see the throughput in respect of the therapeutic effects based on the assessments of need. Is that a fair characterisation of CAMHS now in terms of the challenges faced?
Dr. Cathal Morgan:
Deputy Sherlock makes a very fair point. The HSE is committed to implementing what is called the national access policy because it does exactly what he is calling for, which is the right thing, that is, the connection between primary care services, mental health services and disability services. We are a secondary special service, so we want as many people as possible who do not necessarily have complex needs to be aligned to a primary care service to have a rapid intervention. When there is a complex issue it does require that both CAMHS and disability services work together to make sure that the intervention is right at a point in time. Our national access policy, which my colleague on the mental health side and I are both committed to implementing this year, should make improvements in that area, notwithstanding the additional budgets that have been received by mental health through the service plan this year as well.
Parliamentary questions are the limited power Deputies have in respect of getting answers. To be fair to the HSE, I always receive comprehensive replies to my questions. I submitted a parliamentary question in September 2020, which sought the numbers on the initial assessment nationally. The figure that came back was 13,273. I tabled the same question in December and the same cohort had risen to 16,466. That is a 24% increase on the numbers nationally waiting for initial assessment. The HSE has mapped in €7.8 million but in real terms, the waiting lists are increasing. That is fact; it is based on the HSE's own figures. In CHO 4, covering Kerry and Cork, the number of children awaiting initial assessment rose from 930 in September to 1,436 in December. I tabled two questions, one in September and one in December. The numbers in CHO 4 indicate 242 additional people are awaiting assessment. Nationally, the number waiting for an initial intervention has increased by 7%. Even if Dr. Morgan is talking about changes to community teams – we take what he is saying in good faith – in real time, the real figures show there is still an exponential increase in the waiting lists. Notwithstanding the amount of money that has been mapped onto this and the entirety of the budget, the figures show me that it is still difficult to keep pace with demand. That is something that must be addressed.
I am sure I am out of time but I will make a final point and Dr. Morgan can come back to me later. I wish to raise the issue of deaf schools, in particular the fact that site-specialised speech and language therapy services are being taken away from deaf schools at present. That is wrong and it needs to be revised. They are people who always had a service within those schools and it seems now that it is being excised out of the system by the centralisation of services under the progressing disability services strategy. I ask that the decision would please be revised, in particular as it relates to deaf schools throughout the country.
I confirm that I am on the Leinster House campus. I thank the witnesses for coming in today. I want to return to the new system that is in place, the standard operating procedure.
I can understand the rationale for trying to get a quicker assessment. Reference was made to a rapid assessment and intervention for children. To go from 100 hours in some cases to 90 minutes represents an extreme difference in the level of assessment that children are getting. Clearly, 90 minutes is less than the time the HSE officials will be with us today. I have four children and I know how difficult it is to get any level of interaction with them if they are feeling uncomfortable or in an unusual situation. I imagine it would be very difficult for two clinicians to conduct the level of assessment that would be required and have a discussion with the parents in 90 minutes.
I know this has been raised and that other concerns have been raised. As previously stated, the Ombudsman for Children has said that he believed it would be difficult to do the work in a 90-minute period. The professional bodies have said it is not possible to complete an evidence-based assessment in 90 minutes.
There are questions as well regarding the legality of the new standard operating procedure under the Disability Act. It is not only the representatives of professional bodies who are saying this but the clinicians who are undertaking the work as well. Some 95% of psychologists believe that the current system is unfit for purpose. It is the same with occupational therapists. Some 92% of speech and language therapists who are conducting these assessments believe that is the case as well.
For me, it is difficult to understand where the discrepancies are. We have clinicians and experts saying this is not working and that it will not work for children. On the other side, the HSE representatives present are saying that it is fine and that 90 minutes will cover it. At this stage, we are over one year into the new system. I know we are in Covid-19 and things probably were not in place for a while, but the statistics and data should be available. How many preliminary team assessments have been completed? How many of those were inconclusive?
Dr. Cathal Morgan:
I will ask Ms O'Neill to address specifically the concern in respect of the time range, which is 90 minutes to 100 hours. I will ask Professor MacLachlan to comment specifically in respect of the concerns raised by the professional bodies in the context of the programme he is managing with clinicians.
I am time limited. The key question for me is how many of the assessments have been completed. How many have been deemed inconsistent and have meant children have been put onto a further waiting list?
The HSE cannot say how many of those children were assessed, whether a diagnosis was determined or given and whether they have now been put onto another waiting list. The whole purpose of this was not simply to get children from one waiting list to another waiting list. The purpose should have been to give them an assessment. I find it unusual that we do not have those figures when we are one year and two months into this process. The HSE cannot provide figures on how many children have been given a diagnosis following that 90-minute assessment. I would have thought that if the HSE officials maintain the system works, then such data would be the key metric that the officials would be looking to provide us with. Surely the HSE assesses a certain number of children and, of these, a certain number have been given a diagnosis and are now getting intervention. This is what matters rather than the number of children the HSE has moved from one waiting list to another waiting list.
Ms Angela O'Neill:
I will address the question of the progressing disability services, PDS, for children and young people project and the Disability Act. Our goal is to provide services based on the needs of children rather than diagnosis. The Act does not require the provision of a diagnosis. Likewise, under the PDS system we are moving away, in line with the UN Convention on the Rights of Persons with Disabilities, from services based on diagnosis to delivering services based on children's needs.
Ms Angela O'Neill:
I do not have that information. As Dr. Morgan has said, in parallel to the reform with the standard operating procedure we have the reform around the PDS programme and our additional resources. The combination of these three strands, including the two reform programmes and the additional resources, will allow us to move children on to that intervention pathway far more quickly.
At this point the HSE cannot actually say how many children have received the supports they need. Theoretically, the HSE could have moved 3,500 children from one waiting list onto another waiting list. Is that correct? What I am hearing from clinicians is that 99% of the children they are seeing are not being given any final diagnosis. They cannot give such a diagnosis at this point using the new system. That is one concern. I understand that the HSE will carry out a review of the new system in quarter 1. What metrics will the HSE be basing that review on if the officials do not have the data available easily?
Ms Angela O'Neill:
We have committed to commencing a review in quarter 1. We have identified a range of disciplines that will participate from the Fórsa side and our side to review activity data as well as the reports from clinicians around the operation of the standard operating procedure. The Deputy asked about diagnosis and the professional bodies' views in respect of the standard operating procedure. I will hand over to my colleague, Professor MacLachlan, who will comment on that.
Dr. Cathal Morgan:
I wish to come in on that point. We can provide committee members with a report. There are two things to keep in mind clearly. The first relates to the environment we are working in. We are doing a considerable amount of intervention work with children. I am happy to provide that report to the committee. We are doing quite an amount of work on a remote basis as well. The point cannot be lost in respect of diagnosis. This is specific to autism spectrum disorder, by the way. The point cannot be lost. What we are trying to do is shift the culture, environment and clinical practice to one of intervention from the get-go. It is important that we allow Professor MacLachlan to respond on the concerns raised by the professional bodies. I might ask for a comment on that.
That is fine. I have a question on the data. I asked a question on 15 February about the number of preliminary team assessments that were completed. The response from Dr. Morgan was that the data was not available and that the databases did not allow for the level of scrutiny in respect of the provision of data on the number of assessments that had been completed. I received that two weeks ago.
Professor Malcolm MacLachlan:
I can respond to the other question from Deputy Whitmore. We are aware of the surveys conducted by the professional organisations that the Deputy mentioned. We are of course concerned about some of the findings. The Deputy mentioned that 95% of psychologists responded in a particular way, for example. Unfortunately, there were small sample sizes used by these organisations. Also, the way in which the questions were asked were somewhat problematic. I will be writing to each of the three organisations tomorrow expressing some of these concerns and inviting them to discuss their results because we very much want to learn from them. If we put the three organisations together, approximately 200 people would have responded to the survey. Recently, we did a webinar on remote assessment with clinicians from all of those organisations who are conducting assessments and interventions remotely because of the Covid-19 situation. We had 900 people in attendance at that session and we had 1,300 in total sign up for it. While that is certainly not a vote for or against any form of standard operating procedure, what is does reflect - this is important - is the great flexibility and willingness to approach the current situation in a creative and flexible way.
There is clear evidence that assessments are being done and followed up with interventions remotely. It is very important to emphasise that the national clinical programme, which was only established last year, is a venue for all of these professions to have an opportunity to contribute directly to programme design for the first time in any clinical programme within the HSE. They will be contributing along with service users. There is strong user representation on our national clinical programme.
In previous work I did over five years with the UN programme on the rights of people with disability, we looked at promoting structural change across more than 40 countries in terms of how to implement the UN Convention on the Rights of Persons with Disabilities. In some circumstances, that required changes in policy, such as the Disability Act, while in other situations it required supporting professional organisations to change some of the practices that had become orthodoxy. We often also wanted to promote the idea of a standardised approach in order that we could ensure there was an effective, efficient and equitable approach. This is exactly what the ombudsman is calling for and we wholeheartedly support that call.
I thank the Chairman. I am in my office in the Leinster House complex. I thank the witnesses for their opening statement and contributions thus far. I very much welcome the endorsement of the report of the ombudsman and the willingness to so openly embrace its recommendations. For me, it comes down to the stories I have been told. I refer to the constituents and others whom I have met who have experienced terrible delays or have given birth to a child with an obvious disability and yet had to go through an application process to get an assessment of needs. There is no automatic enveloping of that parent and that child with services. I have difficulty understanding why it is not the case that, from the moment of birth, when it becomes apparent that there is a disability, it does not trigger a system. In the context of establishing a standard operating procedure from birth onwards, what are the impediments to having a system such as that in place? Is the difficulty that we do not yet have a database with all of the information on it that would send up flags and trigger particular things?
People really need those supports to be pulled in around them at particular life stages, such as at birth or when disabilities become apparent as developmental stages have not been met. There is a delay in that regard. Some exasperated parents who have been on waiting lists for quite some time go private but their private assessment does not seem to have any effect. I do not suggest that anyone should jump queues and not all parents can afford to go private. However, if a parent does take that initiative, he or she gains no benefit from so doing but is exasperated while trying to get his or her child seen to.
There is also the issue of ensuring there is an assessment of needs with regard to access to school. I have dealt with another issue involving schools which, bizarrely, are divided into a senior and a junior primary school. A child may go into junior infants in the school at five years of age but between second class and third classes, the child has to apply to go to a different school that may be just across the playground from the school the child currently attends and will require another assessment of needs for that. There is also the issue of an assessment of needs that has been carried out within the previous two years but the referral or the internal references are not sufficient. As autism does not go away or evaporate, why can there not be a continuity of care for such children?
I read all the terminology and the reports. I have read the report of the previous Oireachtas joint committee on the initiation and the recommendations that arose when this standard operating procedure, SOP, was being designed. It really about the real-life experience of people. How should this system operate if it were operating properly? If I give birth to a child, what should happen next?
Dr. Cathal Morgan:
I will pick up on that question. I welcome the Senator's remarks. This is precisely what it is we are trying to do. The first thing to say is that the Disability Act should not be seen as the gateway to services. That is the most important thing. It is the very reason we are establishing the children and young people with disability networks. When a child is born and there is a complex disability need, the mum and dad or the carer should be able to have direct contact with a network team in a defined geographical area where there is rapid intervention that stays with the child and family up to the age of 18, when he or she will move on to adult services. We always make a distinction regarding the statutory process under the Disability Act, but we would much prefer to emphasise the children's disability network teams which parents in the situation the Senator very well described should be able to access through their GP, a public health nurse or a system of making contact. Our teams will be up and running fully by the end of this quarter and we will be publicising that from the point of view of that in circumstances where there is a complex disability need, one should be able to make direct contact and get interdisciplinary intervention.
May I cut across Dr. Morgan? We have a similar vision, which is great. However, using the word "accessing" implies that the imperative to act is on the parent. When a child is born with obvious complex needs, surely the system in our public hospitals should immediately trigger in such a way that the system comes to the parent, who is already trying to cope with all that is before them with the best will in the world. Those to whom I have spoken have told me that they gave birth and there was immediate and beautiful support in the hospital, to be fair, but that there is then silence and one must wait until applying for a medical card, for which there is a six-month delay. One must to prove disability in order to get the medical card.
Dr. Cathal Morgan:
The Senator's point is well made. This is about the integration of services between acute services and community care such that it becomes seamless. In other words, the parents should not have to be concerned about speaking to a paediatrician and then having to speak to a community-based service. That is exactly what it is we are trying to achieve. As we speak, we are working with the paediatric side in acute services. Professor MacLachlan may wish to give the Senator his particular view on that issue.
Professor Malcolm MacLachlan:
I thank Senator Seery Kearney. I agree with her in terms of the desirability of what she has described and that there is a problem. Effectively, that problem originates because we have had services which are hospital-based and other services which are community-based and there has not been a connection between the two. If a child is identified in hospital, the system should ensure that the child can be discharged from hospital and have immediate access to a community disability network team. We and people from the paediatric side, such as the paediatric neurodisability team, are working closely together to develop models of integrated care not just between these two programmes but also with community health officers, public health nurses, general practitioners and dieticians, who were mentioned earlier and are one type of a range of various specialties. There has definitely been a problem but we are addressing it now. The idea is that rather than having a hospital-based model of care and a community-based model of service, it is basically making those two models work together. We recognise there is a problem in that regard and we are doing something about it.
Professor Malcolm MacLachlan:
The impediments are partly to do with staffing, such as the number of paediatricians available, for instance.
They are also to do with different cultures of practice. For instance, I have said a number of times that the clinical programme for people with disabilities is a rights-based and social model. Obviously, in the hospital context, there is more of a medical model. There is no necessary conflict between these two approaches but what is needed are lines of referral that respect the different sorts of expertise. What has generally happened is that a paediatrician might make a referral but there are insufficient paediatricians within the community to work with that person.
We are involved in a group, which is looking to strengthen both the number of paediatricians and the establishment of the children's disability network teams. Once they are there, and have dietician and public health nursing support and so on, then there will be a much better chance that we will have a seamless service.
Professor Malcolm MacLachlan:
The referrals would trigger it. One of the reasons that trigger has not been working is there has been such a backlog of work for children's disability network teams in doing assessments. There is a huge backlog of assessments because they are extremely lengthy, so people do not get interventions. People who should be able to respond to referrals are not able to because there is a disproportionate demand on the time to do assessments. The assessments have to be done so that they can actually result in interventions rather than just having very nice detailed assessments. There has to be action coming from them. If we can establish that, which is the basis of the standard operating procedure, it will also free up a lot more clinical time so the integration with hospital-based services can be much more fluid.
It really requires a systemic approach. There are many moving pieces and the standard operating procedure is a key part to creating real connection between these different elements of the service.
I call Deputy Costello. Can he confirm his location? He cannot hear us so we will move on.
I want to give Dr. Morgan the opportunity to respond to a number of issues raised that he did not get to address. Deputy Murnane O'Connor raised a staffing issue and Deputies Dillon and Sherlock raised various points as well. Dr. Morgan can come back in on some of those issues now. The Deputies can come back in very briefly if they want but I will first allow Dr. Morgan to come in with some answers. We have a little extra time, which is unusual, so we will take advantage of it.
Dr. Cathal Morgan:
I will go back to Deputy Murnane O'Connor's question on investment. She can correct me if I am wrong, but the question was on what level of investment is going into staffing out of the €7.8 million. The €7.8 million is specifically to address the in excess of 6,000 overdue assessments that need to be completed. That fund, given on a once-off basis, is specifically to address the need for additional clinicians, clinicians working overtime and accessing, in certain circumstances, private assessments. However, the key thing is to undertake the assessments.
In the service plan in 2019, we put in more than €6 million for an additional 100 posts. These are therapy grades that have been added to the system and, in this coming year, we will again add more than €6 million for an additional 100 therapy posts. We will provide administrative support as clinicians often say their time is very caught up in completing administrative tasks. We want to free them up, so they are focused on intervention and clinical work.
It is important to make two other comments on staffing. A number of years ago, the National Disability Authority said there was a basis on which we needed an additional 400 therapy posts. That was some years ago. We feel that the additional 200 posts, comprising 100 in the system and another 100 coming, are more than just a good start on that. I am also conscious of the fact that the programme for Government commits to implementing the capacity review report on disability. That provides a basis for the additional 200 posts because we provided evidence for the year-on-year investment that may be required to keep pace with need and demand, in addition to reform interventions. The final point on staffing is that we will undertake a workforce plan later in the year on what is the optimum level of resources needed, not just now but into the future, to respond to the need that is out there.
Deputy Ward made a number of important observations on the experience and involvement of parents. Professor MacLachlan mentioned that through the establishment of the clinical programme and the work we do in supporting the autistic community, we have parents and people with lived experience on these programmes feeding into how we design better services and interventions to meet the real, lived experience of parents. Parents, through these disability network teams, will have close contact with the network teams throughout the CHOs. It is important to emphasise that it is more than just intervention with the child; it is also about what we call family-centred practice. In other words, the carer or parents should be centrally involved in planning for the supports required for an individual. That expands beyond therapeutic interventions. It is also about providing regular access to respite and on occasion, later in life, some people do need residential support. It is taking a holistic view on the needs of children as they move through the life cycle.
Deputy Sherlock referenced the growing number of requests for assessments via the PQ responses given to him, and their exponential rise. Regarding the more than 6,500 that were overdue at a point in time, we are making really good progress with more than 3,000 assessments completed. I will provide more reports to the committee on the detail of that in terms of preliminary team assessments, PTAs, and so on. The additional therapy posts now coming into the system will make a difference to these network teams that are being stood up to do intervention work directly with children and parents. I mentioned the capacity review report, which is referenced in the programme for Government. That is important to us in making sure we have a plan for the year-on-year investment required. We provided much data to help central Government and the Minister of State at the Department of Children, Equality, Disability, Integration and Youth, Deputy Anne Rabbitte, who is extremely engaged, enthusiastic and energetic and was delighted to see that. She has fought very hard for the resources we need, including the Sláintecare reform fund and the additional €100 million we got into our base budget this year.
On the specific needs of people who are deaf or hard of hearing and, in that context, children who are in schools, what the Deputy referenced is the reconfiguration of existing clinicians working on-site within schools on a sessional basis or full time. Two things should be kept in mind. The idea is that children and families will be attached to a network providing interdisciplinary supports. We expect those networks will engage and work closely with the teaching professions and school principals in their given geographical area. That should always be there as a matter of course. Ultimately, while keeping in mind there is a need for investment and reform, we need to ensure there is an equitable distribution of resources so we can respond to more need that is out there.
I think there was a question from Deputy Whitmore, and Senator Seery Kearney may have raised it as well, on our ICT requirements. I did not mention it earlier but it is important to say that the reason we are not able to give sufficient granularity on data is the system we are working with is quite outdated. It is quite an old system but we have gone to tender for a brand new system, which will help network teams. Referencing what Professor MacLachlan said, an integrated system will help clinicians of all disciplines to work in an integrated way through a shared client database system that will give better and more sufficient granularity of detail.
The reason I mentioned my PQ response is there genuinely is a system. I asked the CHOs to administratively review their cases and tell me what they are seeing in terms of the PTAs and what the outcomes are so that I can tell the committee how we have moved from assessment to intervention straightaway so I am happy to do that work. It will mean that the CHOs and the clinicians involved will have to spend some administrative time pulling that together but it is important because we do not want to come away from this session not having instilled some confidence in what it is we are trying to do by way of reform. I am not sure if I have missed anything.
I welcome this process and see it as being part of an ongoing process of communication with the HSE and Dr. Morgan and the team so I welcome most of the responses. It gives rise to further questions but we will interrogate them in due course. The €7.8 million is still hanging out there for me. I received a reply to a parliamentary question dated 22 December from Dr. Morgan in respect of the breakdown of the €7.8 million. I use CHO 4 because it is the area with which I am most familiar but it is representative of many CHOs. He stated that assessments of need completed went from 29 in September 2020 to 69 in October and 257 in November. This is a massive jump. What I wanted to find out was the breakdown of the costs. How was that €7.8 million distributed? I did not get a sufficient answer to that answer. I ask him to revisit Question No. 422 of 10 December 2020, and come back to me again.
In respect of the policy framework for service delivery of the community network teams, could Ms Crehan Roche provide an update on recruitment of the manager posts and the network team, particularly with regard to my constituency of Mayo? Where do we see the interim development? When will we see real progress in terms of delivering services and reviewing them on a quarterly basis in terms of waiting lists and providing on-the-ground services to families and children?
I thank the witnesses for coming before us. I am in CHO 5 and would also like information because I find it hard to get information from the organisation. I know how hard it works but it is an ongoing process so I would ask for figures relating to staffing. What staffing is there? The witnesses say they are getting another 100 from the previous 100, which I welcome. I also welcome the Minister of State, Deputy Rabbitte, because I know how hard she is working on disability issues and I acknowledge her dedication to them and all the different services. Could the witnesses comment on the workforce plan and policies? Regarding the reports on each area, I would be very interested to know the situation in CHO 5 so that I know what is happening.
I thank the witnesses for their contributions. We met recently with Enough Is Enough - Every Voice Counts. My question concerns the fear of parents regarding identifying their child's developmental needs under the new standard operating procedure. I welcome the idea that parents will involved in holistic planning for supports going forward. As was mentioned, it has gone from a 100-hour comprehensive assessment to a 90-minute assessment. What is the parents' role in that 90-minute assessment because that was the fear raised at the committee? Parents were worried that they may miss something that could hinder their children when it came to accessing the services they need. If the witnesses could clarify that, I would appreciate it.
Ms Angela O'Neill:
The review will commence in March in quarter 1. There will be a report at three months and six months while there will be a final report at 12 months so it will take place over a 12-month period. There will be some interim reports. It is being independently chaired so that is important as well.
Dr. Cathal Morgan:
I will move to Deputy's Ward's question about the concerns of Enough Is Enough - Every Voice Counts and the exact parental involvement in the process when it comes to holistic intervention. I will ask Professor MacLachlan to say a few words about that in terms of assessment and the importance of parental involvement in the assessment and intervention process. I might ask him and Ms O'Neill to address the issue of the 90-minute assessment versus 100 hours because we want to clarify something about that as well.
Professor Malcolm MacLachlan:
What we are talking about here is a tiered approach to assessment. Very simply, that means the length of the assessment being undertaken should be matched to the complexity of the challenges the child is presenting with. Some people will present with challenges that are more easily identified so the priority is to get that person an intervention that can help them. Other people will present with much more complex challenges and a broader range of assessments will need to be undertaken to identify the intervention that will be most helpful. It is really important to say that if someone does not get an intervention after the preliminary team assessment but requires a further assessment, that is not in any shape or form a failure. The initial assessment may result in an intervention. It may also give the parents or the service user some reassurance, which is extremely important in this context. Parents are consulted by the initial assessment officer and people conducting preliminary team assessments and should be consulted throughout the process because not only are they key partners in assessment, they see the long-term implications of interventions. Some parents are extremely prepared for that and become co-therapists in terms of interventions while others have so many other demands on them that this is not realistic. HSE employees always want to collaborate closely with family members and parents but one must also judge where people are and whether they are ready to take on that sort of collaborative role themselves.
Ms Angela O'Neill:
I want to clarify the position regarding 90 minutes versus 100 hours. The figure of 100 hours was quoted as the upper limit of the time taken to do assessments in one area.
We certainly cannot stand over that length of time because we do not have the resources to provide that level of assessment. As a public service, we have a duty of care to do the least harm and the most good for the most people. We must allocate our resources as equitably as possible. The figure of 90 minutes is a guide and every clinician uses his or her own clinical judgment to determine what is needed for a particular child. There is great flexibility within that, and we have already seen good examples of areas where the preliminary team assessment approach is being used very successfully.
Professor MacLachlan mentioned his webinar. Some examples were given on that webinar of teams which are using a preliminary team assessment approach, and using it remotely which is even more challenging in the context of Covid-19, and doing that very successfully. There are examples of where this approach can work very well. Our goal in trying to streamline the assessment is to ensure we are reaching as many children as possible and do not have a small number of children getting a Rolls-Royce type of service while others are waiting for years and not getting anything. As Deputy Ward said, some of those children are ageing out of services and we must move away from that kind of scenario.
Dr. Cathal Morgan:
Deputy Dillon and Deputy Sherlock asked somewhat similar questions. I will ask Ms Crehan-Roche, the chief officer of community healthcare west, to address specifically the progress being made in the west which may be relevant to CHO 2. Regarding Deputy Sherlock's question, I will provide a report to the committee on the precise granular detail of the breakdown of the €7.8 million concerning the specific scheme per CHO and how that breaks down. I will also go a little bit further than that. I would like to be able to reflect more detail specific to the level of resources in each CHO, including staffing, to give a broader flavour of the type of resources available.
The Deputy will know from his constituency that CHO 4 covers counties Cork and Kerry, a massive geographical space. It is important to reflect, and this aspect is not often seen, that Cork north Lee and Cork south Lee is where the significant issue with responding to particular needs. That does not necessarily reflect the position overall in counties Cork and Kerry. There is a specific issue in Cork north Lee and Cork south Lee that we must address through this initiative. I will provide that granular detail to the committee. I ask Ms Crehan-Roche to address the issue of the children's disability network teams and how advanced they are in CHO 2, which is an example of all the other CHOs.
Ms Breda Crehan-Roche:
In response to the question from Deputy Dillon, I am pleased to say that in community healthcare west all teams will be in situand will have commenced work by the end of quarter 2 of this year. The objective of all CHOs is to implement the children's disability network teams. Mention was made of the three posts. Those posts have been offered and they will be commencing.
On monitoring, we do quarterly reports and I also chair the national progressing disabilities steering group. We meet monthly and the group includes representatives of all the stakeholders, including parents. We go through a tracker document for all nine CHOs in detail every month. There is therefore monitoring and we account for our stewardship and the resources we are provided.
We are certainly on track in the west and making good progress. We will have the assessments of need completed by the end of this month. I hope that addresses Deputy Dillon's questions.
I thank Dr. Morgan. I will make one or two brief points, which are observations rather than questions. This is our third meeting on this topic, and all our witnesses have been very passionate about the issue. I am not sure if the witnesses had the opportunity to view the meeting with parents and representatives from advocacy groups. What people said was very powerful. As public representatives, we are all regularly contacted by parents who are trying to do their best by their children and really want to get these services.
Obviously, provision is falling down somewhere along the way. I appreciate that the witnesses have said they accept the report of the Ombudsman for Children and want to work with it. Reference was made to there being some level of consultation with people with lived experience but consultation must be broadened. There must be wider consultation with the people affected, perhaps including parents. The position might differ from CHO to CHO but speaking to people who have used the service is one of the key ways of getting things right. I say this because the experience can be overwhelming. Users are given a large amount of documentation. I cannot even imagine what the situation is like now with Covid-19 but we should not fool ourselves by saying Covid is the issue. There were issues with resources, funding and staffing before Covid.
The committee has no difficulty raising this issue when trying to advocate for additional resources. We need to know from the HSE that resources are being used adequately, there is good consultation with service users and parents and they are not being fobbed off. People say the service varies from region to region. In some areas it is excellent while it is not quite so good in others. We must try to replicate best practice in the areas where the system is working in other areas. I hope we will see better and wider consultation processes. I do not mean once-off consultations but monthly meetings with representative bodies to find out what is and is not working. It is not possible to beat that type of knowledge. I hope the witnesses will take that on board or perhaps they will comment on it now.
We want to have regular engagement with representatives of the HSE. I accept that is difficult at the moment because meetings are limited to two hours and witnesses may feel that they are being bombarded with questions. That is down to the time constraints we face as a result of Covid. We would welcome regular reports and documentation as it would allow the committee to examine areas where the system is falling down, give credit in areas where it is working and identify where best practice can be replicated. We cannot allow this situation to continue. It is failing our children and it is not acceptable in 2021 that we still have children falling through the cracks in this way. The committee would appreciate ongoing engagement and welcome regular reports.
I would like to hear the witnesses' views on broadening feedback and consultation for parents in order to genuinely take their views on board. The knowledge of people who have children in different services cannot be beaten. The HSE should welcome that knowledge rather than seeing it as something negative. I ask the witnesses to respond on any of those points or make any concluding remarks they may wish to make.
Dr. Cathal Morgan:
I welcome the remarks from the Chair. She did an excellent job of summing up the key concerns. We will provide whatever support, assistance and participation are required by this important committee by way of reports and information.
I will close by reflecting on a couple of important issues. One concerns the involvement of parents and people with lived experience, in other words, people with disabilities. They will have a central involvement in how we deliver better supports which meet the needs of people's real living situations. We are already doing that, as I mentioned in regard to Professor MacLachlan's work. I mentioned some examples regarding the autism community and the improvement programme being developed in that context. We have parents and people with lived experience on the clinical design programme. We are committed on a regional basis because we need not only top-down approaches but also bottom-up approaches.
Each of the CHOs has to establish and is committed to establishing forums which allow for participation and ensuring the parents' voice is heard. It is important to get across that for quite some time the progressing disability service forums do include parental representatives. We want to ensure it is happening equally and comprehensively in each of the nine regions. We are committed to doing that and to ensuring that it genuinely allows for parents to have a real role in how we develop services and also to be critical friends. During Covid, but also before that, parents have been under tremendous strain which is why we are committed to reform, not for its own sake but putting in real investment. I reiterate the point that the Minister of State, Deputy Rabbitte, has made huge strides in securing additional investment. This year's budget will be €2.2 billion; there is an additional €100 million in our base budget, and an additional €28 million once-off funding to deal with the assessment of need backlog but also for the transforming lives scheme, which aims to help services change how they do business, give additional resources in important areas such as access to equipment and also access to intervention programmes. That is making a real difference.
I mentioned the programme for Government which commits to working towards implementing the capacity report. That is critical for us in the context of looking at a longer-term approach in investment in disability services insofar as we make sure we do the necessary reforms to meet the conditions of the UN convention. I cannot emphasise that enough.
We really welcome today, we have been looking forward to it. We are very much committed to ensuring that the committee gets all the information it needs not only around policy but, as I said in my opening statement, welcoming the Ombudsman's report. The HSE will play its part in implementing its recommendations in the context of the policy that we are already, and have been, implementing.
I thank Dr. Morgan and his colleagues, Ms Angela O'Neill, Ms Breda Crehan-Roche, and Professor Malcolm MacLachlan, and I also thank the members. It is always more difficult chairing these meetings during Covid restrictions so I always welcome people's co-operation. We look forward to ongoing engagement. I propose that we publish the opening statements on the Oireachtas website. Is that agreed? Agreed.
Apologies, the Joint Committee on Health coincided wholly with this meeting. I have literally just left that meeting. I have been following elements of this in and out. I accept the committee has adopted things, but may I come in?
I will be extremely brief. It is about a point I have already made. I thank the witnesses, I have followed some of their contributions. My apologies that I was not here for everything due to the two meetings coinciding.
I wish to make one point which I have made before at the committee. I was a primary school teacher up to 12 months ago. I am hugely concerned about many children attending primary school, particularly children with special needs, at the moment. In recent weeks they have been taught via Zoom, Teams, Seesaw and other online platforms, however some of the other supports that would be typically available during the school year, such as the HSE psychological supports and CAMHS, were not available online. Can someone here respond to that? If teachers, SNAs and other providers of children's needs were able to sit in front of a laptop with a camera and microphone and engage with them, the support agencies should have been able to do that too. That is an example of unmet needs in recent weeks.
Dr. Cathal Morgan:
That is a fair point. We have all been struggling with the lack of normal access to services, whether through disability network teams, primary care teams or the CAMHS and mental health services.
First, remote working undoubtedly does not work for everyone. There is specific guidance for clinicians on this - it is on the website - that where on-site therapeutic interventions can be conducted in a safe way, we try to do that. Second, I understand that the Deputy was attending another committee, but earlier I spoke of how the children's network teams that have been established must continue to work very closely with school principals and educators, teachers, as well as parents in meeting the needs of children who have additional support needs in education settings. Third, we work closely with the National Council for Special Education. We have a regular forum and engagement with it to ensure we work in an integrated way. It is an education initiative, but the programme for Government commits to in-school therapeutic resources and supports. That is being driven through the Department of Education. The HSE is concentrating on the establishment and resourcing of children's disability network teams that must and will continue to work closely with our colleagues in the education sector.
I will conclude by saying that if Joe Wicks, the YouTuber, was able to go online and do jumping jacks and deliver a physiotherapy programme, if one likes, for young people with difficulties, from his living room in London and reach young Irish people across the country, then surely those on the HSE payroll should have been doing something similar.
There is huge frustration, including among parents with whom I would have engaged as a teacher 12 months ago about supports. This is something that the HSE will need to act on and ensure that where someone has a laptop and Internet connection, even a rudimentary programme could be rolled out to alleviate the immense pressures being felt by these kids and their parents. Speech and language therapy can be delivered. I know someone who is getting it very successfully privately. It has to move online in some format, albeit rudimentary. We cannot simply leave the void in the coming weeks.
Dr. Cathal Morgan:
It would be worth our while providing a short report to the committee on this. It may be the case that it has not been provided equally in all geographic areas - and that may be the case in the Deputy's area - but we have done a lot of good work in telehealth. I will ask Professor MacLachlan to speak quickly on this.
Professor Malcolm MacLachlan:
I am sure there will be variations. Earlier, it might have been when the Deputy was at the other meeting, I referred to a webinar we held attended by 900 clinicians. Clinicians presented examples of good practices in delivering remote services including speech and language therapists. We have done other work on behalf of the national clinical programme for people with disability which has looked at more than 120 service providers and their experiences of providing online service. I take the Deputy's point that we need to ensure there is a systemic, joined-up approach so that we do not have pockets of good practice but it becomes the culture throughout the whole system. We will take the Deputy's remarks on board.
I would like to emphasise again that in the national clinical programme for people with disabilities our remit is to implement the Convention on the Rights of Persons with Disabilities. We are very genuine about the whole idea of "nothing about us without us". There will be several people with disabilities on the disability advisory group and the first chairperson will also be a person with a disability. The Deputy should rest assured that we are very committed to ensuring that the perspective of the service user is to the forefront of developing our services.