Joint Committee on Autism debate - Tuesday, 18 Oct 2022

Autism Policy and Health: Health Service Executive

Chairman

The second item on the agenda is our consideration of autism policy. Today, we are paying particular attention to health and related matters. On behalf of the committee, I extend a warm welcome to the representatives of the HSE. We are joined by: Mr. Bernard O'Regan, head of operations, disability services; Professor Malcolm MacLachlan, clinical lead for the national clinical programme for people with disability; Mr. Brian Higgins, head of change, planning and delivery, disability and mental health services; Ms Mary O’Kelly, chief officer in community healthcare for Dublin south, Kildare and west Wicklow; and Dr. Graham Connon, principal clinical psychologist, community healthcare office for Dublin north, north-central and north-west. We are grateful to the witnesses for taking time to contribute to this public session of the committee.

Health is a central issue for the autistic community, even as we move to adopt a less medical-side model of understanding autism. The committee is interested in discussing a range of issues with the representatives, such as assessments of need, staffing and other issues relating to children's disability network teams, staffing issues in general, diagnosis of children and adults, and delays in accessing therapies. We would also like to hear an update on the implementation of the recommendations of the review of the health services for individuals with autism spectrum disorder, ASD. Without access to assessment of needs, autistic children and adults struggle to access the necessary school places, therapies and supports that would allow them to thrive in society. The committee is aware that autistic people face significant barriers in accessing adequate health services and we are committed to addressing these issues and developing a roadmap towards a resolution in our final report, which will be laid before both Houses next March.

To date, the committee has focused on the area of education and we are very interested in hearing from the representatives of the HSE regarding how the health service can better support autistic children in primary and secondary schools and in third level institutions. We will later turn our attention to autistic people in employment. The committee is also interested in how we can make buildings more autism-friendly. That applies to us in Leinster House as it applies to every facet of society.

I thank the HSE for the written statement and comprehensive briefing note that have been supplied. Before we hear from the HSE, I propose that we publish the opening statement and briefing note to the committee website. Is that agreed? Agreed.

I invite Mr. O'Regan to make his opening statement.

Mr. Bernard O'Regan

I thank the Chairman and members for the invitation to attend to discuss services and supports for autistic children and adults. The HSE is responsible for developing, providing and funding health and social care services for autistic children and adults. It does this in the context of legislation, national policy, the UN convention and other international conventions, and the funding provided by the State.

The HSE established the service improvement board for the autistic community to oversee the implementation of the recommendations of the review of the Irish health services for individuals with autism spectrum disorder, which was completed in November 2017. The board consists of senior operational and clinical decision-makers, independent professional and academic support and, importantly, representation of persons with lived experience of autism, participating as equal members of this important collaborative team effort. This is reflected in the membership of each of the two working groups. Its work will shape how services can be delivered to autistic people and create greater awareness of autism to promote inclusion and fostering positive attitudes. The agreed set of priorities are to implement a programme of awareness-raising and engagement with the public, and to build professional capacity and competence among key professionals working with autistic people, including the implementation of a tiered model of assessment.

As regards the awareness working group, information available to the autistic community, family members and service providers was limited and inconsistent and did not always reflect current understanding and approaches. The HSE has taken a comprehensive approach to addressing this and is reviewing existing content, seeking the views of all stakeholders on said content, reviewing what is available in other jurisdictions and working to ensure it can be made accessible online and in print. This quality process has been progressing and will continue into next year. The awareness stream of the programme is designed to respond to the call for greater clarity in respect of autism and the supports available to autistic people, looking at the availability of comprehensive, accessible information for autistic people, families and staff and the public, and supporting AsIAm to provide a national phone line to provide the autistic community with access to useful information. It involves the development of an online information and knowledge hub combined with a helpline aimed at providing contemporary information in respect of services, resources and signposting to other essential community and statutory-based supports and services.

The assessment and pathways working group aims to develop a standardised assessment approach for use in all services dealing with the assessment of those with autism to ensure that every assessment is of an agreed standard. It also seeks to agree a standardised service journey and the implementation of a consistent core service offering across those providing services to people with autism. The working group has consulted widely with key stakeholders in the development of the project and this was particularly important in the context of the implementation of a tiered approach to assessment. Its main focus is to develop an operational model for a tiered approach to autism assessment through developing clear and functioning pathways to services. This will contribute to the national clinical programme for people with disability, NCPPD, producing a model of service, including initial and ongoing assessment. There will be an implementation plan to include training which takes cognisance of existing policies of the HSE, along with the development of processes or supporting protocols. The draft protocol is currently being piloted in two community healthcare organisations and its next phase will bring that up to four community healthcare organisations, CHOs. By way of update, a third CHO has now committed to piloting it and we are engaging with the fourth CHO at the moment.

As regards services to children and families, the HSE is committed to providing high-quality health and social care services to all service users, including those with disabilities and their families. The HSE fully accepts that there are significant challenges in current service provision, the level of unmet need and engagement and communications with service users and families. The HSE, in collaboration with Department officials, is working to develop an overarching roadmap to progress the next phase of implementation of Progressing Disability Services for Children and Young People. The document will broadly address the key areas of: communications and engagement with families and service users; activity data and their collation and sharing pending the roll-out of the new integrated management system for the teams; workforce planning to support increased recruitment of required skilled staff; family-centred practice and supports to teams as they transition to an interdisciplinary and family-centred model of service; education sector engagement, including the establishment of local education and health forums in all CHO areas; a process for review of the implementation of the progressing disability service, PDS, model; and assessments of need, AON, and the challenges presented by the legislative requirements of Part 2 of the Disability Act 2005, including HSE proposals to address the ongoing requirements for assessments of need and associated waiting lists. The document will include prioritisation, timelines and dependencies.

The HSE has developed a waiting list initiative to address the AON waiting list, in addition to a commitment put in place earlier this year to provide 1,000 assessments for autistic children.

The HSE's children’s disability services have been reorganised under the progressing disability services, PDS, programme. The aim at the heart of PDS is to achieve fair access to services for all children with disabilities, based on need. Making that happen is one of the most complex change programmes undertaken within our health and social service, and while we have made progress, we have a lot more to do before it is complete. Services are moving from being professionally-centred to being family- and person-centred. When services are family and person centred the team of professionals and the family are equal partners, co-designing services to meet individual needs. The family brings knowledge of their child and the team brings its expertise. Together they agree on goals and how they will be achieved.

The HSE is facing some specific challenges in children’s services, including a high level of staff vacancies on our children’s disability network teams, CDNTs, a limited employment market and meeting the concerns and needs of children and families. We also need to strengthen adult disability services. Waiting lists and caseloads are a challenge and we must ensure we can prioritise children or adults by their need for specialist or more routine services. It is not acceptable for an individual to have to wait an extended time for either an assessment of their needs, or for supports and therapies needed by people with autism. We recognise that difficulties accessing services create additional stress for families. Our programme of reform is intended to ensure that children have timely access to services based on need. The HSE regrets the negative experience of individuals and families where the current service may fall short of what is needed to meet their needs. We are fully committed to addressing these problems and always welcome suggestions about improving our approach to doing so. This concludes my opening statement and together with my colleagues we will endeavour to answer any questions members may have.

Deputy Pat Buckley

I have been going through Mr. O'Regan's opening statement and there are three points that I want to pick out. I welcome the development of the online knowledge hub and "providing contemporary information in relation to services, resources, and signposting to other essential community and statutory based supports and services". It is grand to be told where to go but the biggest problem we have is accessing the services. The big bugbear I hear about is the AON, which is a huge one. The waiting lists for this are growing every day. I spoke to a family yesterday, including a 14-year-old boy who is in school. The school has been extremely supportive. The boy has a lot of issues and learning difficulties and he finds it successful when he is using the laptop but he is on a two-year waiting list to get the assessment. While the school is supporting him with a laptop, because he cannot get the AON to say he needs it, the HSE and the Department of Education cannot approve the laptop and, therefore, that laptop will be taken off that child before he goes to do his exam in June. That is causing immense stress for the individual and the family because that child's mother is now the teacher. I have had numerous cases like this, and I have been lucky that the individual who helps me with this goes to the High Court to push for the AONs. We are in 2022 and this should not be happening. The statement says the services should be family- and person-centred and that if there are specific cases they should be dealt with but is there any other avenue where the likes of I and others can go when there is an urgency? They are probably all urgent cases and that is where the crux of the issue is. What can we do and what do you say to a family in this situation? This is probably one of the least complicated cases I have come across when it comes to autism.

Mr. Bernard O'Regan

I will comment on that and my colleagues may want to comment as well. The starting point is that the example the Deputy gave is not an acceptable situation and not one that anybody coming in to provide supports and services wants to see happen. People are working to improve that.

I will comment on the statutory AON side first. We have to work within the legislation and the requirements of the Act. We had developed a standard operating procedure on AON, which was found in March of this year to not be compliant with the Act. That has had an impact at a time we had almost cleared the backlog and were beginning to get on top of the issue of recreating delays in the service again. We are also finding ourselves in a challenging situation whereby the same staff who we need to do interventions, which is ultimately the goal of the services, are generally the same staff who are required to undertake AON as well. We have a waiting list initiative and we have been resourced to progress it. That will lead to us endeavouring to procure, including internationally, anything we can to address the formal AON process. Professor MacLachlan might want to comment on the following point as well. We have progressed some work on clinical guidance on how clinicians might undertake the assessments themselves. That is something we are addressing through the HSE structures and under the auspices of the Workplace Relations Commission, WRC. We are engaging with the unions to progress that and we hope to bring it to a conclusion in the coming weeks.

An AON is not required under the Disability Act 2005 to access the service. A referral to the service can be made based on need. In that context, any clinician working with a child should be able to determine what a child's needs are and make recommendations with the family. The case the Deputy has used is a good example of how that might be progressed. The challenge is the availability of staffing. Teams are severely depleted and they have significant caseloads so the capacity of the teams to be able to meet the needs of children is challenged.

Professor Malcolm MacLachlan

I thank the Deputy for the question. Following Justice Phelan's finding that the previous standard operating procedure was non-compliant with the Act, the national clinical programme for people with disabilities had a large-scale consultation involving over 80 people, including service users. We developed new interim clinical guidance to support clinicians in how to go about doing an AON. We were able to do all of that and have it signed off within the clinical system within six weeks. We are now waiting for legal advice to confirm its appropriateness and as Mr. O'Regan was saying, we are addressing it through the WRC.

On another element of what the Deputy is mentioning, a particular challenge in the Irish system is whether one needs an AON or not. As Mr. O'Regan said, there is a right to access services but it is not a requirement. What has happened in our school system - and I am sure the Deputy will be aware that the Education for Persons with Special Needs Act 2004 is under revision - is that a practice developed where schools would ask for a diagnosis because they would feel that would enhance their chances of getting an SNA or additional technology, whereas neither in the Education for Persons with Special Needs Act or the Disability Act is a diagnosis required to access these supports.

That is a custom that has developed but the latest research strongly suggests we should be addressing our people's needs rather than focusing more narrowly on their diagnoses. Disability services are needs-led and it is a bit confusing because assessment of needs is a legal entitlement but, when assessing a child or adult, you would be trying to find out their needs, rather than simply their diagnosis. While recognising the importance of diagnosis for people's identity and sense of empowerment etc., from a clinical point of view it is not the most critical thing in ensuring that person gets the services they need to support them.

Deputy Pat Buckley

When Professor MacLachlan says it is clinician-led, does he mean even a GP or does it have to be an occupational therapist? The professor works on the clinical side but, unfortunately, we do not have in this country a bit of empathy or a common-sense approach. In the majority of these schools, SNAs, teachers and principals go above and beyond because they are with them nearly as long as the parents, so they know the children. If I go back to that family and tell them to go to their GP, can the GP assist them and write a recommendation letter in order they can go to the Department of Education, outline the situation and ask for it to be sorted?

Ms Mary O'Kelly

I thank Deputy Buckley for the question. We are trying to differentiate between a legislative piece and a local operational piece. I am not very familiar with that case but that family may already be linked in with the service. If not, their local primary care centre is a huge point of contact and should be able to signpost them. Notwithstanding the fact that we have a dearth of clinicians, within primary care and disabilities there are occupational therapists who assess children with regard to technology for the school environment. They do not need to go through the legislative assessment of need process to gain that. Also, in many areas of the country, they are able to self-refer and do not need to go through a GP. The first question for a family is to ask whether they are already known to a service. It is likely that they may be.

Deputy Pat Buckley

The mother applied for an occupational therapist when the child was in second year. They are still waiting. The hospital has not acknowledged that she is even on the waiting list.

Ms Mary O'Kelly

The first point of call is to look at the primary care services. If the individual has quite complex needs, they will assist in making a referral into the local children's disability network team, CDNT.

Deputy Pat Buckley

Lovely. Thank you, much appreciated.

Chairman

Next is Deputy McHugh.

Deputy Joe McHugh

I had not planned to speak at this stage. Does the Chairman want to move on to someone else because there are a couple of specific questions that I want to think about?

Chairman

Okay. I call Deputy Ó Cathasaigh.

Deputy Marc Ó Cathasaigh

I thank Mr. O'Regan for the presentation. To be honest, I am not sure I exited it a great deal wiser than I entered it.

I often talk about how I used to be a primary teacher. I was often the first person a parent met who tried to put a name to what they knew about their child. They knew there was something there but I might be the person to say it was possibly autism, dyslexia or dyspraxia. That is a big thing for a parent to deal with. I used to always try to emphasise that a label does not limit or disable a child; it should enable him or her and be a toolkit giving access to the tools needed to make sure a child reaches his or her full potential. If it is a toolkit, it remains locked until the assessment.

Notwithstanding what Ms O'Kelly said, if we are taking about assessment and standardised pathways, we cannot have that fragmented approach whereby a Teachta Dála such as Deputy Buckley does not know where to begin with a family. I cannot point him to the pathways because it is too fragmented. Ms O'Kelly spoke about referral to a CDNT, but in many areas they are extremely understaffed and struggling to get to the people they already have with outstanding assessments. I do not see how speaking about approaching them informally makes sense, if we are trying to standardise assessment pathways and, after that, pathways to services.

The incidence rate of autism across a population is relatively predictable, whatever figure we take for that. One in 68 is one figure. I would not like to stand over that and do not have the level of expertise to do so. The witnesses will know better. That means in any given cohort of young people moving through school, we should have a clear idea of how many of them are likely to require an assessment. What modelling are we using? What are the best estimates on current need? If we get there, let us work backwards. If we know on a population level how many people in a cohort are likely to need an assessment, how many hours do we need to provide the assessment for that number of people? If we know how many hours we need in order to provide assessment, we know how many staff we need. We have to unlock that toolkit for parents.

Practitioners and GPs up and down the country are meeting parents in that stressed space of knowing something is happening, maybe putting a name to it for the first time and then saying to a parent "I think it might be this but I'm not sure when we're going to get an assessment for you". There may only be two assessments available in that school this year, for example. Then are we telling parents they can go private? Not every parent has the means to go private.

Will the witnesses talk to me about that? We should be able to model across the population how many people are likely to be autistic and, from that, to infer how many hours we need for assessment. From there, we should be able to infer how many posts we need to fill. Will the witnesses give me an answer on some of that please?

Professor Malcolm MacLachlan

I thank the Deputy for the question. It is instructive to look at some of the statistics. We have about one third of children on waiting lists to receive services and we also have about one third of posts on CDNTs vacant. I do not suggest it is an exact match but if we had those CDNTs fully resourced, then we would probably be able to provide services to everybody who needs them.

In developing the protocol, we do not want an approach whereby every child gets the same number of hours of assessment. It is important that the assessments are tailored to the complexity of the presentation. A challenge we had before was that we had assessments that took 60, 70 or, in some cases, over 100 hours and clinicians would feel a thorough assessment required that level of detail. The protocol we have been developing involves a tiered approach where some children could be assessed in as little as three hours and others may well take over 100 hours. It is not simply a matter of drawing the average. We are trialling the protocol that has been developed. For the 19 people who have gone through the protocol at the moment, 11 have been assessed at tier 1. That is within a five-hour timeframe, maximum. Those people might have taken ten times that long to be assessed had we not developed that protocol.

Deputy Marc Ó Cathasaigh

That answer is tangential to the question I put. On a population-wide level, we should be able to model this. We should have an understanding of how many people in a given cohort are likely to have autism.

Whatever knowledge we have about the different tiered structures and the level of assessment that is needed, we should be able to infer and model on a population-wide basis how many people we understand to require tier 1 and tier 2 services, and the total number of man and woman hours we are going to need in order to provide the level of assessment we need. Do we have that kind of modelling?

Professor Malcolm MacLachlan

Those are exactly the data we are collecting at the moment. If we assume a 1.8% occurrence level for autism, we can certainly infer the number of kids who are likely to present with autism. The whole point of developing the protocol is to ask how many of that cohort from whom there is a demand for services can be assessed at tier 1, tier 2 and tier 3. Once we have those data, we will be able to translate that knowledge directly from the hours of assessment to the number of professionals required to fulfil that demand.

Deputy Marc Ó Cathasaigh

I am now straining the leniency of the Chairperson, but when do we expect that process to lay an egg? It is fine to tell parents that we are in the middle of the process but when are we going to see an output?

Professor Malcolm MacLachlan

The first egg has been laid. We have an interim report that will be publicly available in a couple of weeks. I am sure it will be shared with this committee. That is the first part of the assessment process for the protocol.

The second part of that assessment process should be complete in March. That will be the second egg. The data available at that stage will allow us to convert the number requiring assessments to the different types of assessments liable to be required. We can then project that directly into the clinical hours involved.

Chairman

I ask Professor MacLachlan to forward that report, when it is available, to the clerk and we can circulate it to members of the committee.

Professor Malcolm MacLachlan

I certainly will.

Senator Catherine Ardagh

I thank our guests for coming in today. I appreciate Mr. O'Regan's comments conveying regret to families. Many families who are at their wits' end are watching proceedings. They feel helpless because they have not been able to get services for their children. They do not know to where to turn. They are turning to us politicians and we do not have the answers either. Our guests have the answers. I am not sure whether any of our guests are the architects of the CDNT model but that is the system within which they are working. It is not a system that is working very well. I am glad that it is being reviewed and that changes are being made.

We know anecdotally that 55,000 children are waiting for an assessment of needs. Our guests might update that figure and tell me where we are and how many children nationwide are waiting for assessments of need.

It is great that Professor MacLachlan is bringing in a new system and protocol around the assessment of need but it is ridiculous that it was not done previously. It is clear that assessment does not take 100 hours for every child. What the professor said is welcome, and it was great to hear. That type of practical vision is needed across the HSE.

My colleague, Deputy Buckley, reported on a constituent of his. It is definitely cheaper to supply a laptop in such a situation than to pay professionals to carry out an assessment of need. Some parents are told to go to the High Court and their children will then get an assessment of need within a month because the HSE moves to a different budget to respond in such cases. There must be more practical ways to look at these issues.

If I were to look at the CDNT model from the perspective a cost-benefit analysis, as someone such as Michael O'Leary would, I would say of course we should have people working from community centres. We could have therapists working 12 months of the year. They would not be in school settings. That could be considered the way to get the most out of them. However, we also must consider the journey for parents. Many working parents have children with autism and other disabilities and it is very difficult for them to take time out of work to bring their children to all the different appointments necessary. I know many parents who tell me their places of work have given up on them and they are unable to take any more days off. Those parents then have their own journeys whereby they are almost being bullied by their employers because they are taking time off and perhaps are working less hard than they were previously. It is difficult.

I am glad that Professor MacLachlan mentioned educational engagement, which is crucial. That is the missing link here. The CDNT network is there but it must be redirected towards schools around the country. Therapists must be in the schools because parents cannot be dragging their kids to therapy appointments. Many parents do not have the means or wherewithal to do so. It is unfair. For a child from a family at a social disadvantage, it is not going to be a priority to bring that child to an appointment with an occupational therapist or a speech and language therapist. We have a super education system. It is ingrained in us that people need to bring their children to school. Therapies must be delivered in a school setting. Our guests much push for that delivery.

There is a one third vacancy rate. I asked a few occupational therapists and speech and language therapists why they do not want to work in the HSE or the CDNTs. They told me they do not like it and they do not like the politics involved. They said they do not get much interaction with children because there is a concentration on family engagement and teaching the parents. Those young therapists want to be working directly with kids. They like the idea of working in a school-type environment. These are young women who are not motivated by money and are not going to be whipped into providing an enormous amount of hours. They would love to work in a school-type environment where they know their children and environment. The children are happier because they are not being dragged to appointments. We must consider the ethos within the CDNTs. Why do people, the majority of whom are women, not want to work in the CDNTs? The education piece is the answer to that. We need to push therapists back into the schools via the CDNTs, because that is the structure in place. It would allow therapists to have a school they know and attend. They could build up a rapport with other staff members. That is crucial.

I agree with much of what my colleagues have said about AON, but that is a monster in itself. My message today, which our guests might pass on, is that we should redirect our resources, or as much as possible, towards the schools. We are always going to have children who are not in school settings and who will have to be given therapies in the community. However, for the majority of children, especially considering the increase in ASD classes and early intervention classes, the key is delivering therapies in a school setting.

The purpose of the work we are trying to do and the discussions we have with colleagues in the Department of Education, the NCSE and so on is to build capacity, under the governance of the CDNT, in order that we have a service designed that takes account of the child wherever he or she may be, including in school. It is unfortunate that there is a perception and, in some cases, the reality has developed whereby staff, for whatever reason, were not working with children in schools. There is no reason that cannot happen. It was never the intention of the policy.

Deputy Joe McHugh

I thank the delegation for their discretion. For what it is worth, I am not looking for a response. My own county and constituency are not included in the pilot scheme. There are nurse specialists in schools and the scheme has completely changed the dynamic of schools and reminds us that people are individuals. Maybe the evaluation might point to something.

Ms Mary O'Kelly

We do know initially that there were huge positive outcomes in terms of building the capacity in the school environment, particularly the capacity of teachers, which was critical.

Deputy Jennifer Carroll MacNeill

I joined the meeting about 25 minutes ago and have been listening to my colleagues. Can I contribute later, Chair?

Chairman

Yes, please indicate when suits.

Senator Eileen Flynn

It is critical that children with autism have supports in school. In rural locations like Ardara in County Donegal, there is little or no support for autistic children. Parents have resorted to setting up groups in these areas so that all special needs children can meet once a week. It is very tough to secure supports in rural communities. The people seated around this table are not to blame. I understand that in this job we talk a lot about funding, etc. As a public representative, however, I believe that there are two parts to this issue. One is being diagnosed and two is to meet the needs of each child. What is the solution for people in rural Ireland? Can the HSE delegation tell us what we can be done to better the lives of children in rural Ireland? Not only have these counties been forgotten about but, most importantly, rural children have been forgotten about as there are more services and access to services in cities.

I am going to throw a spanner in the works by saying that children from ethnic minority groups can be autistic or have additional needs. I did not see it or hear that aspect named in any of the sessions this morning. It is important that children on the margins of society are included and provided with equal access and have their cultural needs met. I know many Traveller children who are autistic and there are more of them now than in previous years, there have also been a large number of missed diagnoses and families did not know that there were supports. How do we support these families and children?

How does the HSE ensure that disabled persons' organisations are a priority in its work? These are groups that need to advocate for our children and parents as well. I knew about AsIAm, as an organisation, before I was ever a Senator. I am aware of its work on inclusion.

I have listened to other members. What solutions can the witnesses from the HSE, as professionals, suggest? I ask because we are not professionals. I know people who have autistic children and I know people from within my community who have autistic children or are autistic but I am not a professional. What solutions can we, as a committee, include in our recommendations? I ask because we, as members, get only one bite at the cherry because we only have this committee for a short period.

Mr. Bernard O'Regan

Again, my colleagues might comment on some aspects. In a previous role, I worked with an organisation that was located in a rural county and that provided services to children and adults with disabilities, including those with autism. The model we operated comprised a team of clinicians who provided therapy and conducted assessments. That team predated the CDNTs but, in effect, was one.

We also had a range of other supports to work in conjunction with the team. These included autism resource workers, personal assistants, home support and all these kinds of supports. They were working in conjunction with the team so that direct supports were provided to a child or family where they were. It helped to enable implementation of the recommendations a therapist might make. In many respects, apart from providing direct support to the child, some of those staff also played a key worker role and were able to act as a bridge between different components of the service and to support families in navigating the services. As we develop the services, and we want to develop the clinical services, we must be mindful that other supports and services that people need must also be developed.

It is probably worth further clarifying that it is also not a requirement to receive a diagnostic assessment. The assessment of need is the legal piece. Children can access services and receive a diagnostic assessment without it. It is worth knowing that.

One of the major measures the HSE is taking through Sláintecare at grassroots level is the Healthy Ireland initiative. This is particularly relevant when we talk about rural communities and cultural diversity and inclusion. Senator Wall was with us on Friday in Athy, which, historically, has been quite a deprived area. Grassroots measures we are considering are parenting, healthy eating made easy and inclusion and activities for children. That is an extremely powerful approach. It involves grassroots action and communities doing things for themselves with assistance. The aim is to be very inclusive. That could be done well at a grassroots level to build capacity.

Senator Mark Wall

I welcome our guests. Ms O'Kelly and Mr. O'Regan referred to an assessment of need not being required. Many of the families I deal with tell me they are being told they do need an assessment of need. They are being told by clinicians, day in and day out, they will not be able to access services unless they have that piece of paper in their hands. Can it be confirmed again that an assessment of need is not required and can that message be conveyed to the other clinicians putting up these obstacles?

I am sure all Members of these Houses come across this daily. People are told that unless they have an assessment of need done, they will not get into the services. The second issue is that more and more families that come to me are told that they have to take part in parent support classes and family forums. I want to know if this is a change in policy in the HSE. The families tell me that this deprives them of one-to-one services that their children need. Many of the people who are going to these classes come out with a lack of understanding of how they should deal with their children when they come out of the classes because the classes are quite complex. People are left in a situation where they do not know where to go next. Will the witnesses comment on why the HSE seems to be going down the road of parent support classes and family forums to deal with the issues that are arising?

I also want to mention respite care, which is important to families. I want to read a reply that I got about respite care from a constituent last week. It states that disability services endeavour to sanction as many in-house support requests as possible within their defined home supports allocation, which in 2022 is less than €100,000 for all disability service users. It states that there are more than 7,000 children for the children's team to address, in addition to a full adult caseload. It states that in this context, it has to manage the expectations of families who are requesting support. Will the witnesses comment on where respite care stands? Respite care is essential for many families that I deal with, but this is the reply they are getting.

I refer to the launch that Ms O'Kelly said happened in Athy last week. It was influential and it is good that it happened. Where does it go next? I found what was happening at the launch insightful. We were actually going back into communities, where the HSE does its best work. For young people, children with autism and indeed autistic adults, what will healthy communities mean?

Mr. Bernard O'Regan

I will answer a couple of the questions then ask Dr. Connon to comment on one. Ms O'Kelly will address the question on Athy. I will not deal with them in order, if that is okay.

We are provided with funding each year to provide respite. Respite services were impacted during the couple of years of Covid because of capacity and infection prevention and control, but they are getting back to normal levels of service this year. We were also provided with funding to increase respite services in 2021 and 2022. Those services are either in place or are being put in place. We agreed with the CHOs and service providers that where funding was allocated, for example, as full-year funding for a new development which would not be in place until the second half of the year, it would still get full-year funding to provide alternative respite, including summer schemes and so on. That would mean the full resource was available to be used. It would be fair to say that there is a gap in respite services. It is better in some areas of the country than others for all kinds of historical reasons and due to funding streams at the time. We are trying to grow the respite capacity for both children and adults across the country. That takes time. In 2021, we were allocated funding for nine additional respite services, with one per CHO. That makes a difference within that CHO, but it is also just one service in a large catchment area. It takes a number of years to grow those services.

I will deal with the family forum and the group work as two separate issues. The family forum is the structure for us to engage with families so that they become part of the overall governance of children's services. We have always seen it as critical that the setting of a child's development goals should be done in partnership between the staff and the family. That should be replicated at all levels of the structure. The family forums are intended for us, at children's disability network team level, to engage with families who are connected to that service and to find a way to involve them in the service's governance.

Group work is a different focus. It is about providing supports to children and families. That is sometimes well done and sometimes best done in the context of group work. It is not an alternative to individual work and support that a child might need. There is not a change in the delivery of policy. In the absence of full staffing levels, with a depleted service, it looks like we are doing more group work than individual work, but it is not an either-or situation. Both types of work have merit. I can provide some feedback that we have received from families, not just direct feedback to the HSE, but also feedback to the lead agencies about how beneficial families have found that work to be. It is understandably frustrating for families if that is all that is on offer and there is not individual work to complement it. I acknowledge that.

Dr. Connon might comment on the assessment of need. A child or family absolutely do not need to have an assessment of need in order to access services. I communicate this often. We are happy to reiterate that again with regard to the system.

Dr. Graham Connon

That decision is part of the national access policy that was agreed by the HSE between disability and primary care services. The criteria relate to people's level and complexity of need, and whether those need to be addressed by an interdisciplinary team or in a unidisciplinary manner in primary care. Those are the criteria that are assessed when deciding whether someone with a disability, or autism in this case, should access primary care or the children's disability network team. Services have been consolidated, so everyone should be able to access one of those services, so there should be no cracks to fall through. There is always a possibility that services will disagree on criteria. A mechanism called an integrated children's services forum, ICSF, is built into the policy, which will resolve any disputes if services disagree on those criteria. A decision will be made in that forum and a service will be assigned. Those forums are in the process of being set up around the country. We will hear about how they are doing. Anecdotally, I can tell the Senator that where they have been set up, there has been a much lower than expected level of referral to integrated children's services forums. Once clinicians understand how the referral process works, there seems to be very little disagreement. Several forums have been cancelled because no disputes have been referred to them. We are getting better at that. It is a positive development.

Ms Mary O'Kelly

I will comment on the letter first. I like plain speaking myself. I will look at that letter with regard to disability services. It is hard to read and to hear. In some respects, it makes no sense to the individual who is seeking respite.

Senator Mark Wall

I thank Ms O'Kelly.

Ms Mary O'Kelly

I can talk about the CHO for south Dublin, Kildare and west Wicklow. Much is happening with regard to the review of services as a result of the PDS programme and people who are really working hard to improve services. Respite is being reviewed. Two new respite houses are coming into service in our CHO. One is in the Kildare area. There are different ways of looking at respite. We acknowledge that overnight respite is not necessarily the answer for everybody. We are looking at after-school services, Saturday clubs, and reaching children and families in a different way which is a little more meaningful.

That is one piece.

We have had the engagements across CHO 7 covering south of Dublin and Kildare and west Wicklow. The 11 teams have had the engagement with families. They have invited the families in for the first engagement around the family forum. A lot has come up and there is an awful lot of learning for us in that. That is the idea behind the family forums. It goes back to the fact that no matter where people live, there should be a local forum for them. All these forums will help us meet the needs of the local population in a better way because they are telling us what the problem is rather than us making assumptions and having a blanket response, if you like, to health provision.

Regarding places like Athy, as the Senator said, this is Sláintecare at the grassroots and at its best. As the Senator saw, it is not about high-tech surgeries but the interventions that are happening on the ground to help our whole population, and to promote health rather than intervention. Where we would like to go with Sláintecare is the enhanced community care, ECC, programme. It has been very much focused on adults and older persons to date. We now need to look at the children and young persons population, be it under 18 years or under 25 years. The progressing disabilities configuration has been huge and there is still a long way to go. There is also the foundation of primary care, where the strategic development for children in primary care has been public health nursing and speech and language therapy. Other services, especially therapeutic ones, have evolved and are disparate - that is the word. They are not systematic. If we are talking about a tiered model in which we want to focus a particular service such as a CDNT on more complex needs, a foundation is needed under that. That is where we would like to go next with Sláintecare.

Senator Mark Wall

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Chairman

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Deputy Jennifer Carroll MacNeill

I thank the officials for coming in. Having listened to my colleagues' contributions and the answers to them, I am a little confused because this dialogue is far removed from the experience parents relate to me. As Members of the Oireachtas, we hear about every part of the public sector and all the public services. This area comes up again and again and is by far the most challenging because of its impact on young people.

Deputy Jennifer Carroll MacNeill

Sure.

Chairman

The meeting is now suspended and we will reconvene in five minutes, at 12.50 p.m.

Sitting suspended at 12.46 p.m. and resumed at 12.54 p.m.

Chairman

We are now in public session.

Deputy Joan Collins

I have been listening intently for the past hour and a half. As was said earlier on, in some ways I am probably more confused than I was when I came in. This probably reflects the frustration and confusion felt by these children and their families. I do not think that after this meeting, they will feel there is light at the end of the tunnel. Deputy Carroll MacNeill got to the crux of it, namely, staffing levels. If we do not have the staffing levels, we do not have the access. A parent who wants to get his or her child assessed and then referred to therapies and for other things he or she needs because of the effects of the disability, such as nappies and shoes, is looking at anything from 18 to 24 months. It has not really changed.

When I was elected in 2011, one of the first issues raised with me involved the CHOs. I would have referred to CHO 7 a lot. This involved phenomenal early intervention waiting lists that children outgrew. Many children were involved with St. John of God and other services. The CDNTs were supposed to be the start of a change in how children were assessed and parents supported. There was a lacuna for about three months for a lot of parents between the time when they lost their services at St. John of God, or whatever service provider they were with, and the time when they began to deal with the CDNTs. Many parents reported to me and other Deputies that they did not find those initial CDNT assessments very helpful. They were being referred to family supports, family forums and parents' support, all involving what parents can do to assist their children, rather than getting the direct service they needed such as speech and language therapy.

Professor MacLachlan said that the WHO has referred to it as a model that other countries should use. Unless we have the staffing levels, we will not be able to resolve this issue in the CDNTs, in the community or in the schools. There have been issues with therapists for the past 12 years. I heard the witnesses say the HSE has an international recruitment campaign but I have seen recruitment campaigns for mental health nurses and nurses in general for the state of Victoria in Australia all around the city. The whole world seems to be scrapping over staff to fill vacancies in these areas. I am at a loss and perhaps the witnesses can direct me. Why can we not have a drive in areas such as this? I know therapists have a right to go wherever they choose after graduating but we must target these services and open up graduate courses so more people can go into these services. We also need to keep them in the country through efforts in areas like wages and conditions. I know that is not the witnesses' duty but there needs to be concentration on getting graduates into these services. I do not want to sound very pessimistic but we are talking about funding for 830 to 850 vacancies yet we are talking about only being able to recruit 100 or 150 people for CDNTs. In addition, there is pressure on other areas looking for the same therapists. Do the witnesses think we should have a plan with targets and a focus on retention in respect of these services? For families facing the prospect of waiting for 18 to 24 months, it is not a good place to be from the point of view of the children's supports.

Mr. Bernard O'Regan

I will comment on some of those questions and Professor MacLachlan on other parts. We are working with our HR colleagues at the moment to progress a dedicated recruitment campaign for children's services. That includes the points I was making earlier on the work with current panels, graduates and the international campaign and we have other measures that we are putting in place to incentivise staff to come and work in the children's services. It is a priority area for the HSE to focus on.

A difficulty we have, and it is almost the perfect storm, is that there has been significant investment in the HSE in recent years and many aspects of service have been going to the same pool to draw on a similar profile of staff. The system is not producing enough of the types of staff that we need. Professor MacLachlan will have some direct experience of this. We need to be producing more graduates in Ireland to meet our need. We need more speech and language therapists and so on. We need more programmes that allow people who have a primary degree in another area to do a short conversion programme that allows them to move into a therapy role and so on. There is a range of measures that the college systems need to develop to meet the needs of the State. Moreover, these are needs that are going to increase. The capacity review report of disability services has a projection of what is needed over a decade. If the level of funding identified in the capacity review report were to come over the next decade, we have an indication of the type of staffing that we need. We need the system to produce those staff.

I am in no doubt of the commitment among my colleagues in the HSE, including in HR, that recruitment into the children's network teams is absolutely a priority area and one that we are working to encourage people to go to work in. However, I say that while needing to acknowledge that we continue to compete with some other service areas that are also in urgent need of a similar profile of staff.

Will Professor MacLachlan comment on colleges?

Professor Malcolm MacLachlan

Deputy Joan Collins said that there was not light at the end of the tunnel. It is important to say that there definitely is light but the tunnel is way longer than we would like it to be. I do not think she is at all confused about things. She articulated how many interdependencies need to be addressed. Unfortunately, it not one quick fix that will get us to where we want to be in a couple of years' time. It will take longer than that. Overall, at HSE level there is an initiative to look at third level and design new approaches to health sector training. Specifically in the disability sector, for over a year the clinical programme has been advocating that there would be a particular initiative around health and social care professions, as Mr. O'Regan mentioned. For instance, you can have graduate entry into occupational therapy and speech and language therapy. People can graduate fully in a two-year span on a graduate-entry masters degree. That is a very short feed-in time in health. Even investing in those professions would make a significant difference, as well as the other health and social care professions. Importantly, when I was trained as a clinical psychologist I was trained to work almost independently whereas now we want people to come out ready to work in an interdisciplinary way, for instance, to work on children's disability network teams. There needs to be a very specific initiative around disability. We have been advocating for that in the HSE's overall approach to third level to make sure that there is a strong voice around disability. It is crucial that we put out the message that there is a bright light at the end of the tunnel because if we talk down disability, it will become less attractive for people to come in here. While we can in no way run away from the huge challenges we have, we need to create a virtuous circle that will attract more people to train and work in this area.

Deputy Pádraig O'Sullivan

Mr. Brian Higgins

We are taking applications. We have 127 participants at the moment, of a total of 180. There will be a public call-out for further participants.

Deputy Pauline Tully

I met some of our guests previously at a meeting of the Joint Committee on Disability Matters. We discussed similar issues then. Unfortunately, I have not heard anything different today. The issue of the CDNTs is raised with me continuously. Is there someone in the HSE who leads on the progressing disability services programme? None of our guests has that specific role in his or her title. Does it not warrant something like that?

What measures are being taken to address the shortage of staff? Our guests rightly mentioned an average shortage of 28%. They stated that career progression within disability services is an obstacle. The HSE has implemented the interim recommendation of the career pathway in primary care only. Why has it not been introduced into disability services? What other incentives to work in disability are being offered? I understand that nurses, for example, are incentivised to work in ICUs and are given an additional payment for doing so. Could something like that be looked at?

Turning to the inclusion of certain therapists on the critical skills list, I understand the HSE has let many staff into the system. Our guests referred to a shortage of graduates within the various disciplines, and I presume they have informed the Departments of Education and Further and Higher Education, Research, Innovation and Science. In a response to a recent parliamentary question, I was told by the Minister for Further and Higher Education, Research, Innovation and Science that 15 additional graduate places were being made available in physiotherapy. I hope I did not get the full answer and that that is not the sum total of the additional places being created.

Section 39 organisations provide services on the HSE's behalf. There is a discrepancy in regard to pay and conditions. Until that is addressed, we are going to continue to lose staff from section 39 organisation to other organisations. I acknowledge that this might not be our guests' responsibility, but if the HSE is contracting these organisations, there has to be a level playing field if they are to work for children. On the issue of putting services back into schools, there is a problem there because the therapists are being taken back into the CDNTs, which are already under-resourced. I do not know how that is going to work.

On assessments of need, a High Court ruling in March found that the preliminary team assessment was not compliant with the Disability Act. Has new guidance on assessment been circulated to the CDNTs since that? Just yesterday, the parent of a five-year-old son who is non-verbal came to see me. He had received an assessment in February and it was deemed to be compliant by the assessment of needs officer but, obviously, that has since changed. I had a quick read of the assessment and it recommended that he be given a full autism assessment. I do not think the original preliminary team assessments were addressing the backlog; rather, they were putting people onto more lists to get a proper assessment for autism or to access services, which they have not been able to access, given most people are coming to me telling me there is a two- to four-year waiting list. If new guidance has issued, what timeframe are looking at to clear those lists?

Professor MacLachlan stated that a diagnosis to access education is not required but, unfortunately, because there are not enough special school settings, schools are insisting on the diagnosis because they want to prioritise those most in need. Having a diagnosis also provides vital information to schools to help that child.

From being a teacher and a special educational needs, SEN, co-ordinator in the school, I know that getting information from the then child development team was vital. It was so good, even in small recommendations on how to assist a child with autism to adapt to a new environment. It made a considerable difference. If the CDNTs are working with children and providing input to schools, that is important.

I have another case where a child who has been diagnosed with ASD and a mild learning difficulty also has a different, quite rare disease. The two are not connected. The child requires intense physiotherapy for the other disease. They have been told that, in being able to access physiotherapy, the child should go on to primary care, but the child would then lose the supports of the CDNT for autism. Can the two services not work together? I was told by the Minister of State at the Department of Health, Deputy Butler, that the CDNTs and child and adolescent mental health services, CAMHS, would start working together better. I am sure the whole lot, primary care included, should be working together.

I have a number of other questions but I will leave them for the moment. I will leave the officials to address those first.

Mr. Bernard O'Regan

I will deal with some and Professor MacLachlan might comment on some as well. In terms of the current structure of the leadership around the CDNTs, I am the head of operations. In that sense, the implementation of the policy is within my remit. I have a small team of people who support me in that. We are currently looking at the structure around it and I do not know what the outcome of that will be. I am very aware of the point implicit in the Deputy's question in terms of the importance of having someone dedicated there. That is something that I am looking at.

In terms of the impact of the critical skills list, I will follow-up on that with HR colleagues and come back to the Deputy. I do not have an answer to be able to specify the benefit but I will come back on that to the Deputy.

In relation to section 39 pay, that is an issue, not only in relation to our children services but across other service areas as well. It is something that has been raised with Government. The Deputy is correct that it is not something that is within our gift in the HSE to be able to resolve, but certainly it is something the impact of which we experience in terms of engaging with organisations that are really challenged in terms of their staffing. In different parts of the country, that is having a significant impact. It is certainly part of the suite of answers or solutions that need to be addressed.

In terms of the options and incentives for staff, we have a number of measures we are finalising with HR both to recruit and retain staff. We have invested, for example, and communicated in recent weeks a very significant commitment to staff training. We are looking at sponsorship. We are looking at different types of contractual arrangements that might allow some flexibility for people. My HR colleagues might be raising concerns about some of these. For example, we want to explore the option of somebody coming to work for four years but spreading his or her salary over five years so that he or she has an option of travel. It costs the HSE four years' worth of salary for four years' worth of work but it gives somebody options in terms of, maybe, travelling with some income and the job security of having a post to come back to. We are exploring all of those kinds of opportunities and incentives, particularly mindful of a young cohort of people who would be interested in those kinds of things. It is not only a pipeline issue. There are other things we are also looking to do.

In terms of the AON guidance, perhaps Professor MacLachlan would like to comment on that.

Professor Malcolm MacLachlan

In terms of leadership, I am the clinical lead in disability and I guess I am the person responsible in terms of designing clinical programmes.

On what Deputy Tully said about section 39 organisations, I could not agree more. In fact, I raised this at the Joint Committee on Disability Matters. That is something the Joint Committee on Disability Matters could look at because it relates to public sector employment agreements.

In terms of the assessment of needs, that guidance has been developed and signed off by the highest level clinical committee within the HSE. We are obliged to go through the WRC process where we consult unions and make sure they are okay with it. It is hoped that will be complete within the next few weeks.

The Deputy mentioned the previous standard operating procedure. We previously presented evidence that 84% of people who went through the preliminary routine assessment received some sort of intervention. Some of them needed further assessment as well. Essentially, that is gone now anyway because Ms Justice Siobhán Phelan found it was not compliant with the Act.

May I comment briefly? Obviously, I do not know the specifics of the case the Deputy has identified. If she wants to have a conversation with me after the meeting to follow up on that with her, I am happy to do so. In general, however, residential services are covered by regulation and are inspected by HIQA. There are requirements that those in residential services have access to appropriate multidisciplinary supports. In a way, therefore, there is a legal structure in place to help to drive something. There may be challenges in respect of availability, but I know that many providers of residential services try to source appropriate supports depending on the profile of the people in their services. However, it should never be the case that somebody is on medications outside of proper supervision and review of those medications. Also, the use of medication as an alternative to appropriate services is not acceptable anywhere. I would be happy to follow up on that matter.

The definitions of home support - and this overlaps a little with definitions of PA services - are something we are working on. We will convene a group to bring some clarity of definition and consistency in respect of accessing services because we are very aware of the type of issue Deputy Tully raises. Part of our national service plan commitment for this year is to progress that.

Professor Malcolm MacLachlan

If I may follow up on that, this issue, the interaction of disability and mental health services, is the one I am personally most worried about within our services. Currently, if someone develops a severe mental health condition or, often, a moderate one, he or she needs to be referred out of services if he or she wants to receive medication. We are trying to promote a model whereby there would be in-reach, for instance, by psychiatrists into a children's disability network team or an adult disability team. The reason that is particularly important for people with autism is that sometimes they will have taken longer to build up familiarity and trust with the support team. Members can imagine that if someone develops mental health problems, perhaps because of the frustrations of living with autism, and is then referred out of a team, it can often make his or her mental health condition much worse. Furthermore, the teams to which people are referred are often not well resourced. This also puts psychiatrists in very difficult circumstances in that they may often feel that the best intervention for someone with a severe mental health problem is not necessarily medication, but within their own teams they do not have other health and social care professionals. I know for a fact that many psychiatrists are very concerned that they are having to prescribe medications in lieu of alternatives. To me, this highlights the importance of having a model whereby we would have in-reach from psychiatry where medication is potentially beneficial. That is probably, in my view, in the minority of cases, but it would be great if the committee could highlight that because we have a lot of service user participation in the service improvement programme for people with autism. Within the protocol - and I have already described the independent evaluation for that - the consistent issue that is raised is the mental health of people with autism.

Chairman

That concludes the contributions of members of the committee. Deputy Ó Murchú, who is deputising for Deputy Buckley, would like to ask some questions.

Deputy Ruairí Ó Murchú

Mr. Brian Higgins

The Deputy asked what we need. We need a tiered approach. Not every child needs 37 hours of assessment. It helps us to get the most of out of a stressed system, but it is also the way we should be doing business. We are piloting the tiered approach to ASD assessment in our area and getting good results. We are only starting off in our implementation. It is early days and we need more data, but the experience of doing it has been positive because we are using intervention as a form of assessment. We are getting back to intervention first and using the information from that as a source of observation and diagnosis in some cases. We have been surprised by how effective that has been in certain cases. It is not for every child - some children need a more complex tier of assessment. That is the direction in which we need to be going. In terms of assessment of need, there is a legislative obligation that we cannot get out of, but if we are giving interventions within six months the number of assessment of need referrals drops off.

If we are using this tiered approach to get back to intervention first, based on obvious need rather than cumbersome assessment, we will be putting our resources in the right direction and clients will benefit.

Chairman

In your opening statement, you said that it is not acceptable for an individual with autism to have to wait an extended time for an assessment of needs or for supports or therapies and that is the crux of it. As I said at a meeting with representatives of CHO 8 on Friday last, staffing levels within the children's disability network teams, CDNTs, are a disgrace. We have heard evidence from families of having to pay up to €1,800 for private assessments. We have also heard stories of people getting assessments that are not being recognised. It is not acceptable, to be quite honest.

I like the tiered model. That is the way forward. Having listened to the explanation of that model today, I have a better understanding of it and I believe it is the way to go. There will be two more pilot areas, following on from the two that have already been done. What CHO areas will those pilots take place in? I will talk about my experience with the CDNT in Longford. Last April we met the Minister of State at the Department of Health, Deputy Rabbitte because there were more than 230 children waiting for an assessment of needs and more than 700 waiting for services. Our team is now worse than it was at that time. During the summer we had 3.8 whole time equivalents on the team. There was no social worker, 0.8 in physiotherapy, 0.5 in speech and language therapy, one in occupational therapy and things were just getting worse.

A number of members have raised the issue of third level education. Who is responsible within the HSE for liaising with the Department of Further and Higher Education, Research, Innovation and Science? Whoever that is has not done his or her job because there is not a sufficient number of graduates coming through the third level system. There are four colleges that run occupational therapy courses in the country, with around 90 professionals graduating every year. Statisticians could figure out the number of those graduates that will go into the public system and the number that will go travelling, based on available data. Somebody has not done his or her job. The HSE has not engaged with the Department of Further and Higher Education, Research, Innovation and Science across all of the services, including physiotherapy, occupational therapy and speech and language therapy. The therapists are not there so somebody has failed. Families and children have been failed because this work has not been done. We have more than 700 vacancies because we do not have enough qualified people coming through the system. As Deputy Casey said earlier, we should know the numbers and percentages. We should know how many children are going to need services and we should have front-loaded courses at third level in order to have graduates coming through. Whoever is responsible for that within the HSE has failed and that is why we are in this situation.

Reference was made to the Disability Act. What engagement has the HSE had with the Government with regard to changing that legislation vis-à-vis assessments and services? This issue was highlighted a number of times today. What engagement has taken place and is there resistance to making amendments to the Disability Act? Reference was also made earlier to family engagement and I have read about autism support workers. In my experience, it is the professionals who do the family engagement but while that is happening, services are not being provided for children. The family engagement should be undertaken by non-professionals or by autism support workers. They should be giving courses to parents. I have seen that in my own local area, with professionals giving courses even though we have a massive shortage of such professionals and ultimately it results in fewer services being provided to children.

I invite our guests to comment further on the school inclusion model, which I believe is the way forward but I am a bit worried that there will be no HSE involvement in it. Do I sense a conflict with regard to the school inclusion model? As Deputy Ó Murchú said, taking children out of a setting in which they are comfortable, namely their school, and bringing them into a clinical setting, with parents having to take time off work, is not ideal. I have seen the centre in my own local area and I made complaints about it when I first went into it. It was not even properly painted and was not an appropriate setting for children. The model involving the school, where they are comfortable, is better. We have met the teachers' unions recently and discussed the fact that we need to change the training for teachers to enable them to work with children with autism. We should also be training the SNAs to provide some elements of therapy on a daily basis but that must be backed up by professionals coming into the schools regularly.

Deputy Pádraig O'Sullivan raised the issue of professionals in special schools. Reference was made to 104 out of 136 special schools. Why were only 104 schools picked, and not the full 136? Is that a manpower issue? There are lots of questions there and I invite Mr. O'Regan to respond.

Mr. Bernard O'Regan

Thank you Chairman. Please remind me if I miss anything. Workforce planning is led by our human resources, HR, section but none of us here works in that area. In fairness, what I would suggest is that HR would send a note to the committee. As far as I know, they have made representations, although they may not be adequate. Given that they are not here, I will ask that they send a briefing note to the committee on what has been done. In that way the committee will at least be aware of what steps have been taken.

We have raised the issue of the Disability Act at the Joint Committee on Disability Matters and the Joint Committee on Children, Equality, Disability, Integration and Youth previously. The feedback we have received is that any review of that Act where the perception would be that it is being driven by an attempt by the HSE to wriggle out of its current legal responsibilities would be very challenging and contentious. In fairness to ourselves, that is not what we are suggesting. What we are suggesting is an enhancement of the Act so that it incorporates a right to services as well as a right to assessment and that will not make it easier for us. In terms of the kinds of issues that we are already facing, having a legal requirement around them does not make it any easier to implement than where we are at today but it does equalise the importance of intervention and the assessment.

The school inclusion model, on which Ms O'Kelly might want to comment further, was designed to focus on supporting a child to be able to access the curriculum. That was its primary focus. In some respects, it had quite a narrow orientation but we know that many children that we support have needs that go beyond, but also include, accessing the curriculum. It is not the case that there is any tension between us or a row going on. Rather, there is a debate to be had about the right direction in which to go.

Our view is having a model that takes account the child in all its environments is important and that includes access to the curriculum. That does not take away from the potential for staff to work in special schools. The 104 schools versus 136 is purely a function of an agreement with Government to address the change that those schools that had access to a service prior to reconfiguration would be addressed first. I expect that at some point in time, Government will engage on the other schools. To be honest, adding more today will not make it deliver any faster than we are able to go at the moment but the 104 is directly related to the schools that had access to services being delivered in the school prior to reconfiguration. It was purely a function of that. Again, I need to highlight that even since then the increased number of special classes and the number of children who are also accessing mainstream school has also continued to grow, even in the past number of years, and they are not included in that figure either.