Special Needs Education: Impact of Covid-19

I welcome our guests from Inclusion Ireland in committee room 1. They are Ms Lorraine Dempsey, chairperson; Mr. Enda Egan, chief executive officer; and Mr. Mark O'Connor, community engagement manager.

I wish to advise our guests that by virtue of section 17(2)(l) of the Defamation Act 2009, witnesses are protected by absolute privilege in respect of their evidence to this committee. If witnesses are directed by the committee to cease giving evidence on a particular matter and they continue to so do, they are entitled thereafter only to a qualified privilege in respect of their evidence. They are directed that only evidence connected with the subject matter of these proceedings is to be given and they are asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against any person, persons or entity by name or in such a manner as to make him, her or it identifiable. We expect witnesses to answer questions asked by the committee clearly and with candour. However, witnesses can and should expect to be treated fairly and with respect at all times in accordance with the witness protocol. If they have any concerns in this regard, I ask that they bring those concerns to the committee's attention immediately.

I ask Mr. Egan to make his opening remarks and to limit them to five minutes.

Mr. Enda Egan

I thank the Chairman and members of the committee for the invitation to present to them on the issues pertaining to the education of children with special needs during the Covid-19 period thus far. Inclusion Ireland conducted a survey of parents in the first three weeks of May on how school closures were impacting on their lives. In total, 1,064 people responded to the survey, with 89% of respondents reporting that their child was missing school quite a lot. Educating at home is not working well for most respondents. There are huge barriers to home schooling for parents who, in most cases, are not teachers. Some parents noted that their child presents with behaviours that can be challenging or he or she has poor attention skills which require the support of a skilled teacher. The support from schools has been variable, from excellent to non-existent.

Our survey indicates that most families have access to some form of technology that enables them to access schoolwork at home. However, 11% have no access to such technology. While the virtual classroom is an option for some, there is a technology deficit which means that many children have not been accessing education in this way. A full technology audit and supply of equipment must be undertaken with immediate effect to ensure the children who would benefit from virtual education can do so.

Research tells us that school closures for extended periods cause regression in learning for children with intellectual disabilities. These children need to be top of the priority list for a return to school. They generally fall into the categories of those with highest support needs, traditionally referred to as moderate, severe and profound intellectual disabilities, as well as severe autism. For most children with disabilities, direct access to teachers, special needs assistants and a structured lesson plan derived from their individual education plan is what is required. These children find it more difficult to engage in virtual classes and should, therefore, be allowed back to school as early as possible.

The Department of Education and Skills has initiated a summer programme, which has expanded to include additional children in 2020. However, the scheme continues to exclude cohorts of children with disabilities and has been characterised by poor planning, leaving schools and families frustrated and in the dark. One trade union has stated the lack of guidance makes the scheme unsafe for pupils. Parents are also reporting a lack of transport as a major barrier to attending the summer programme and there are significant fears for September. The National Council for Special Education has previously expressed concern about the scheme being open to challenge on equal status grounds. The scheme must be opened to all children with intellectual disabilities, including those in second level, as they also experience regression.

A very small group of pupils in the Irish education system will not be able to attend school for some time. These are medically fragile pupils with disabilities to whom the Department needs to pay particular attention. These children need regular access to their teacher via remote means or through the home tuition scheme. It may require the Department to supply technology into homes as these children may not be back at school again for a significant period. It must be noted that HSE therapy support which enables education has also ceased.

Inclusion Ireland believes the following should happen to mitigate the undoubted and continuing regression in learning and skills for children with intellectual disabilities. A technology audit must be carried out to ensure all children who would benefit from virtual classroom support can do so. We must include all children with intellectual disabilities in the summer programme. At present, secondary school children remain the subject of possible discrimination by their continued exclusion from the scheme. Children with disabilities need to be at the top of the priority list for returning to school and transport issues must be addressed in advance. The resumption of HSE therapies such as speech and language therapy and occupational therapy must occur without delay. Many of these services can be delivered in a virtual manner. The Department of Education and Skills urgently needs to identify all children who are medically compromised and put in place supports for them to receive a home tuition package until it is safe for them to return to school. Some of these children will not be back in school until a vaccine is available or Covid-19 is fully suppressed.

That concludes my opening statement. I thank committee members for their time this afternoon. We are very happy to answer any questions they may have.

I thank Mr. Egan very much. I will now open the floor to Deputies for questions. I call Deputy Butler. She has ten minutes.

I welcome the witnesses to the committee today. I thank them for taking the time to be here and for their opening statements.

The National Council for Special Education and the Department of Education and Skills acknowledge that school closure and extended periods of time outside the classroom and the normal learning environment as well as the loss of regular school routine is causing regression in learning and skills and is having a widespread negative impact on children with complex needs and their families. Mr. Egan has also said that. All the central stakeholders are also highlighting the Government's summer programme as a pathway to combating such issues. Mr. Egan called for the scheme to be opened to all children with intellectual disabilities, including those in secondary school. Is it his understanding that this includes all children with complex needs that are in preschool, primary school and post-primary, as well as those with Down's syndrome? If this does not happen, in his view how potentially devastating could the long-term effects of such a decision be?

Mr. Enda Egan

I thank Deputy Butler. I will pass the question on to my colleague, Mr. Mark O'Connor.

Mr. Mark O'Connor

I thank Deputy Butler very much for the question. It would be an understatement to say the summer programme has been characterised by confusion. The Department has definitely changed the message it gave to organisations such as Inclusion Ireland, AsIAm and Down Syndrome Ireland over a period of weeks and that in turn has led to confusion among parents, schools and so forth.

At the moment, children with Down's syndrome who are in secondary school cannot avail of the summer programme. Children with moderate intellectual disabilities at second level cannot avail of the programme. Children who are in special classes at second level cannot avail of the programme unless they have autism. No magic happens at 13 years of age to suggest that a child's education does not regress over the summer period.

These children have the same issues as children at primary level. If the Department is making a decision that we should be admitting these children into the scheme at primary school level, I cannot see why there is a cut-off where it goes into second level.

I would like to draw the Deputy's attention to what the National Council for Special Education, NCSE, said about the scheme in 2015. The NCSE is the organisation which gives policy advice to the Minister and the Department. It stated:

As the research evidence does not support the provision of an extended school year on the basis of a diagnosis of ASD only, we are concerned that continued funding may be open to challenge on equality grounds. Research shows other students with significant intellectual disabilities .... can also experience regression in learning and a slower rate of recoupment.

For that reason, the NCSE was "not able to recommend continuation of a scheme .... which is inequitable". While it is welcome that additional children are in the scheme this year, it is still excluding a large cohort of children.

Is Mr. O'Connor is telling me that a 13 year old or 14 year old child with Down's syndrome, who now is in first year, as against being in sixth class last year, will not be able to avail of the July provision scheme? A simple "Yes" or "No" will suffice.

Mr. Mark O'Connor

Correct. No, he or she cannot avail of it.

Is it the case that this would potentially have a devastating long-term effect on this cohort of children with additional needs, including those with Down's syndrome?

Mr. Mark O'Connor

Absolutely. The research is pretty clear on it. Long absences from school mean children with intellectual disabilities can suffer regression in their learning. Making up that lost ground can take quite a period of time, if it is ever made up.

Does Mr. O'Connor believe this is a capacity issue? To me, it is almost like an abandonment of the children and their families who have really suffered for the past four months, obviously through no one's fault because we have a pandemic. These children with additional and complex needs may not get support because they are now in secondary school. I imagine that will have a long-term effect.

Mr. Mark O'Connor

The Deputy has hit on a very important point. We must be mindful the country was faced with a situation that nobody could have ever imagined with schools closed down and people scrambling to address that. Our own survey, which we would have presented to the Minister in May, indicated that for children with intellectual disabilities and autism, home education has been pretty much non-existent. It has been very difficult for parents to engage that.

Is it correct that 70% of July provision will more than likely happen in the home of the child as against in the school setting?

Mr. Mark O'Connor

Based on previous years, that is correct.

I heard on radio this morning and in the opening statement that lack of transport is a major barrier to attending the summer programme and there are significant fears for September. Will Inclusion Ireland go into further detail on the type of problems we are likely to face in terms of transport in order to give us a better idea of what we are facing in September?

Ms Lorraine Dempsey

Normally during the summer programme or extended school year scheme, the special transport arrangement for the children in special classes and special schools would continue. However, because of the disjointed nature of schools closing down in March, as well as the possibility of those contracts being terminated, along with losing drivers and the capacity to get that up and running, the Department for Education and Skills and the Minister said they would support families to make transport arrangements by way of a grant. The problem with the grant is that simply by the very nature of special schools and special classes, they are dispersed across the country. We only have 130 special schools across the country. Many children can travel up to a maximum of an hour and a half one way to go to school in the morning. For a parent with more than one child or trying to get back into the workplace, it is simply untenable that they would be making a three-hour round trip twice a day for their child to have four hours of school-based July provision. Despite offering a grant, which would not be paid until the autumn in October or November, as well as the logistics for parents in organising transport, it means that where a child does have school-based provision on offer, the parents simply will not be able to take that up due to the transport issues.

Is this one of the reasons such a high percentage of the July provision will have to take place in the child's own home?

Ms Lorraine Dempsey

No. That 70%:30% split is based on the normal July provision summer programme, which in previous years was only accessible to children with autism and children with severe to profound learning disabilities. It was a much more restrictive and discriminatory scheme. What normally happens is that 70% of children avail of home-based provision because not enough schools are in a position to open up during the month of July to provide the extended year scheme. The Minister, Deputy McHugh, said that last year some 230 schools participated - out of 650 eligible schools - and the current number that have opted in to participate this year is 200 schools. There are more than 4,000 schools in the State. There are mainstream national and post-primary schools that have got the staff together and that have a grouping of children who would otherwise qualify except for the fact they are in mainstream primary schools and are not in a special class.

If the witness does not mind I will move on because I am limited with time. I have one last question and one point to get across. One of Mr. Egan's conclusions speaks to the need for schools, teachers and special needs assistants, SNAs, to be supported to take part in the scheme as an important component in opening the scheme to a degree by which we can include all children with intellectual disabilities.

On Tuesday the committee heard about SNAs. Ms Marie Daly, CEO of Crann Support Group referred to the childcare sector losing many childcare workers to the SNA sector, that they have all summer off, finish work at 4 p.m. and that they do not have the burden of responsibility or the paperwork to carry out that childcare professionals have. I strongly disagree with this insinuation and I did not have an opportunity to come back in during that discussion on Tuesday. Any of the SNAs I have encountered are very hardworking people who have a strong vocation for the important role they play within our education system.

In Ms Dempsey estimation, how many more SNAs would be required to deliver this scheme for July provision? I believe the Minister, Deputy McHugh, said that 230 SNAs are working with families as part of their temporary assignments.

Ms Lorraine Dempsey

To clarify, the temporary redeployment is through the HSE. Thousands of SNAs underwent the vetting process to transfer through the redeployment programme through the HSE. While it the figure of 230 was lauded yesterday by the Minister as a success story, in effect it showed there were serious issues with the redeployment phase and the vetting process, which significantly delayed linking SNAs up with children through the health programme.

Does Ms Dempsey have a figure for how many SNAs would be required?

Ms Lorraine Dempsey

The HSE scheme is hoping to provide support for 1,200 children this summer. I do not believe this is necessarily feasible. Parents can now employ an SNA for the home-based provision but they are already saying there is huge difficulty in getting tutors and SNAs to take up the home-based provision. We have more than 9,000 parents registered currently for an expression of interest but we will not know until October how many parents actually managed to engage a tutor or SNA.

I thank Ms Dempsey.

I first want to acknowledge and thank the representatives of Inclusion Ireland for their attendance today, and all the speakers throughout today's sessions. For me, some of the hardest stories we have heard in recent months and weeks are from parents and children with autism, intellectual disabilities and special educational needs. Some of the stories are on the loss of learning and in some instances, unfortunately, the regression that children are seeing.

My first question is general, because education is not just academic or scholastic. From talking with many parents I am aware of the huge impact also in the loss of socialisation. This has had a hugely detrimental impact on children. I invite a brief comment on that general question.

Mr. Mark O'Connor

The Deputy is right that if we look at education in the whole this is why schools are so important. Obviously, the main function of any school is to impart a quality education on the children who attend but there are also the many softer things.

Many socialisation activities such as being invited to birthday parties or becoming involved in the local GAA team happen through schools. As the Deputy recognised, it is a very difficult situation.

While travelling to Leinster House today I listened to the RTÉ "Morning Ireland" programme. On it, a mum of three children who have autism related the detrimental impact on her youngest child, a four year old. He has regressed and lost most of his speech. I acknowledge the Deputy's point that regression is certainly a factor. In our survey, families highlighted that children were missing school a lot and missing their friends. Although some of the children could engage through online interaction, many could not. The socialisation piece is what they are really missing. There is a certain amount of routine around school for many of them. Not all people with autism or intellectual disabilities are very rigid in their routine, but many of them like to have a routine. They simply cannot understand why they are unable to go about their normal business and go to school. That is a great difficulty for them and their families.

That reflects the current situation. On the issue of the loss of speech, many parents fought an inch-by-inch battle to make progress. The children and their parents were so proud of the gains that were made. It is very difficult for them to see those gains being lost.

On summer provision and the way in which it is laid out, July or other summer provision is typically four weeks long. The Government document states that it can be a minimum of two weeks, but if one gets two weeks in the school-based programme, one is not entitled to supplement that with two weeks in a home-based programme. Are the witnesses concerned that children will not have the depth of engagement that was available in previous years? In addition, as I understand it, if there are two or three children in a family, the same number of hours applies to them. There is a maximum number of hours under the home-based programme for all of the children in the family. Those children may see a much reduced benefit than they may have experienced in previous years.

Mr. Mark O'Connor

On the first point, the Deputy is correct if that a school is offering two weeks, the family cannot engage the home-based piece. One cannot avail of the school-based and home-based programmes. To clarify, families do not have the option of turning down the opportunity of doing two weeks in the school in favour of four weeks in the home-based programme. If the programme is available in the school, it must be taken up there. As was stated, if only two weeks are being offered in the school, one cannot supplement that with the home-based piece.

On the issue of siblings, I do not have the exact numbers to hand, but there is a little bit of extra tuition available if there are siblings in the same house. That was not available in previous years, but this year there is a small amount of additional tuition available. Instead of having a strict limit of ten hours for one child, there are extra hours available for other children in the house.

When the scheme was announced, there was reference in the Chamber and the press release to almost doubling its capacity to cater for up to 20,000 children. Yesterday in the House, the Minister referred to 9,200 children having registered for the home-based programme and perhaps 3,400 for the school-based programme. That is a long way short of 20,000 children. I fear that there has not been enough capacity planning in the context of the number of teachers and SNAs required to deliver school-based or home-based programmes to that number of children. Are the witnesses concerned that a substantial number of those 9,200 children may be disappointed because they will not be able to find a tutor? That may be difficult to gauge. Is it a concern the witnesses have?

Ms Lorraine Dempsey

The Deputy asked pertinent questions yesterday about capacity planning and whether the Department done any pre-planning in the context of expressions of interest from schools and educational staff to establish whether the promised programme was deliverable. When it was initially announced, it raised the hopes of thousands of parents. As the weeks have gone by, we have realised that all is not what it seems in terms of the numbers and capacity. Only 200 schools have registered. Those schools do not have the capacity to deliver a school-based summer programme for all the children enrolled in them. The number of children for whom they can cater is limited by the number of staff who have opted in. Some 9,200 parents have registered. I encourage other parents to register an expression of interest now, go through the process and see whether their child qualifies for the scheme.

To reiterate, we will know until about October how many of the thousands of people who registered have managed to engage with a tutor or an SNA in the home. It is going to be very late in the day where anybody can laud this as being a successful programme for supporting students.

It is about capacity. One should not promise our families anything unless one knows one can deliver in terms of capacity.

On the HSE-led measure, which is the third aspect of the summer programme, the Ministers, Deputies Harris and McHugh, have indicated that they would like to support 1,200 children. This also depends on the opt-in of SNAs and the opt-in of school buildings whereby a school that is not doing school-based summer provision or, indeed, is has expressed an interest in making its building available to the HSE for a HSE-led scheme with SNAs opting in. Again, the Minister, Deputy McHugh, said yesterday that of the 200 schools that have opted in for a school-based programme, 35 have opted to provide a premises for the HSE-led scheme. There is absolutely no way we can guarantee capacity for 1,200 children to be supported through this respite-based programme rather than the more educational-based programme.

In terms of the 9,200 children for the homeless programme, the comments made by the witnesses are very valuable. Are they concerned that children and families will be disappointed because they will be unable to find a tutor? Will a large cohort of people be affected?

Ms Lorraine Dempsey

Absolutely. We know already that families are having difficulties sourcing tutors who are registered teachers with the Teaching Council or SNAs. Pay is an issue for SNAs. Childcare, which the committee dealt with earlier this week, is an issue for staff signing up to the programme. There are many deterrents there to people being physically able to provide the support to families over the summer.

My final question is on children with Down's syndrome. The point has already been well made by Deputy Butler about children with Down's syndrome who attend mainstream secondary education and who are not entitled to avail of this programme. There was much hope when the Minister announced that children with Down's syndrome would be entitled to avail of this programme but it now appears there are large categories of children with Down's syndrome who will not be in a position to do so. Do the witnesses agree that this is a form of discrimination?

Mr. Mark O'Connor

It would seem to be. We, in Inclusion Ireland, can believe whatever we want but we would have to go back to the policy advice the Minister has. The National Council for Special Education, whose representatives will be here later this afternoon, have previously described the scheme as inequitable. By not allowing children with Down's syndrome and moderate intellectual disabilities, even with mild intellectual disabilities, into the scheme, because many of these children present with co-morbidities that further complicates their situation, the NCSE is on the record with policy advice to the Minister that the scheme is inequitable and open to challenge under equal status grounds. I do not think it can be any clearer than that.

As I have 30 seconds left I will ask a final question. Is the proposed transport grant feasible or workable? Will it assist parents to get their children to the school-based programme?

Mr. Mark O'Connor

For some parents it is something that will help. As my colleague, Ms Dempsey, has said, for many parents it is not. I always cite the following example. There is only one special school to cater for counties Monaghan, Cavan and Leitrim so people could be faced with travelling for an hour and a half each way to school. That is an hour and a half to drop the child at the school, an hour and a half to travel home and the same in the afternoon, which is not feasible.

I thank the witnesses.

I call Deputy Carroll MacNeill who she has ten minutes.

I thank the witnesses for coming in. Many of my questions have already been asked so I will try not to repeat them and let more people in as the day goes on. Therefore, I might take less time.

I wish to ask about the impact on children at different stages of development and I thinking about the different ages. Obviously our concern is for all of the children. For many years the evidence has been that the earlier supports and interventions are provided the greater the impact. I will talk about assessing intellectual disability and the allocation of schools. This morning, I spoke to a parent who told me that their child simply cannot be assessed for cognitive reasons for intellectual disability until the age of five, with the practical difficulty then of accessing and registering for a special school. I ask the witnesses to talk me through the background to the issue and explain how this creates problems. I understand that waiting lists for special schools cannot be created because of the change in 2018 concerning waiting lists in general.

Can Mr. O'Connor provide additional information in that regard?

Mr. Mark O'Connor

In terms of early intervention, all of the international evidence points to a golden window of opportunity with children being the three-to six-years timeframe. This is not to suggest that on reaching age six, learning is not achievable. There are fantastic gains and learning that can occur after that age but three to six years is a golden window of opportunity.

In terms of assessment, we are probably straying into the health arena. In terms of HSE assessments of needs, however, there is a statutory six-month timeframe for such assessments and a further month to produce reports. We know that this timeline is not met in approximately 90% of cases and that this means families do not have that accurate picture of their children. In terms of how this factors in in schools, when one looks at the enrolment policy of any school in Ireland, be it a mainstream school, special classes or otherwise, the special education sector requirement is a psychology report that is less than two years old. For a family that does not have such a report and is not awaiting one, this will be a barrier to their child getting into any school.

I take Mr. O'Connor's point. One of the cohorts that appears to have been left out is that comprising children with Down's syndrome transitioning to mainstream national schools in which there are no designated special classes. Is this an issue that has been highlighted often in the Inclusion Ireland survey or in anecdotal reports? I am not concerned about any one child in particular and I am sure this is not the only cohort that has been left out of the system. These children, having been left out of the school system for six months, now have to make the transition to national school but without any supports. This will be difficult because that transition is in some ways more difficult for these children. Is this unique or is it something Inclusion Ireland is coming up against?

Mr. Mark O'Connor

It is definitely something that is coming up. There is a cohort of children that is moving from supported preschools, either in the mainstream via access and inclusion model, which is an excellent system, or through specialist early years provision. If they are moving into specialist provision in primary school, they will have access to the summer scheme. Let us look at that from a human rights perspective. The United Nations Convention on the Rights of Persons with Disabilities, which Ireland has ratified, is very much focused on mainstream education as the route we need to go down, yet the Department provides that a child who goes down the mainstream route to education will be denied this vital support. I will hand over to my colleague, Ms Dempsey, at this point.

Ms Lorraine Dempsey

There has been a huge amount of work done by the Departments of Children and Youth Affairs and Education and Skills, the National Council for Curriculum and Assessment and other bodies in regard to transitions and the importance of transitions for children with disabilities. For this particular cohort, whether they have Down's syndrome or another syndrome in the context of which an intellectual disability arises, it is very important to plan that transition. These are children that would have had supports in preschool under the access and inclusion model which my colleague mention and which is led by the Department of Children and Youth Affairs. That transition has been broken since March. It would have involved children visiting their new schools and work with them on changing and getting ready for the move from their local preschools into primary schools. It is very disjointed now. The fear families have is that their children will have a huge amount of difficulty settling in come September.

In a general sense, what the Department needs to focus on for all children, but especially those with disabilities who are transitioning into primary education, particularly mainstream primary schools, is the transition package. It needs to come up with resources that all families and all schools can use, especially for the first three months, in terms of getting children back into school. In the absence of guidelines, we do not yet know what schools will look like in the autumn. However, schools will need support to bring children who have had that six-month gap in their education at an early education level into a school building where they may or may not be social distancing, where there is a much more rigid environment than in preschool and where the numbers are generally much greater. What we need is a system response for all children, with the cohort of children with developmental delays being the subject of a particular focus.

I do not think it is something we can do individually as families or, if we are lucky, with a team around us. The system needs to respond to what will be a much broader problem with children come September.

I think Ms Dempsey is right. For children without intellectual disabilities or any social vulnerabilities other than the Covid-19 period it will be difficult enough, particularly those who have been in an ECCE scheme and have had to drop out of it and may or may not go back to childcare or any sort of structured environment for July or August, in addition to the usual two months of settling in for any child. For children with medical or intellectual additional needs of one kind or another, it will be very difficult and disruptive and we will ask departmental officials about that later.

We have already discussed the nature of the different types of regression and I do not want to focus on that too much. I refer to physical, as well as emotional and intellectual, regression. I ask Ms Dempsey to talk me through some of that. Children have made great gains physically and parents are trying to work with them at home. When we talk about transitions, it occurs to me that the physical side is just as difficult in many ways. Can Ms Dempsey talk me through the nature of some of the physical regressions?

Ms Lorraine Dempsey

Certain cohorts of children normally have inputs from physiotherapists, access to social and indoor play areas and opportunities to use and develop their gross motor skills, which is what we have been talking about. All of those services closed in March along with their preschools. The opportunities for them to develop have been very restricted, mainly to their own homes. Children with physical disabilities require a lot of therapy input and assistance with equipment, including splints and seating assessments. Where possible, in emergency cases the HSE and HSE-funded bodies have tried to respond to that with PPE and major precautions. However, for the most part there have been massive delays in interventions to support the physical development of children. Playgrounds have been closed and there has been a 2 km travel restriction, which has impacted heavily on the ability of families to utilise what is around them in the community outside of their home setting to bring on children's gross motor skills development. It is not rocket science when a therapist explains the things that parents can do, but if they do not have wraparound services and are isolated it is extremely hard to know how they can support their children.

I understand. Being locked down has been a problem for all children, but it affects some even more. I ask Ms Dempsey to talk me through the restrictions in terms of more hands-on therapy and hands-on physiotherapy. How can we get back to the level of support required?

Ms Lorraine Dempsey

Currently some service providers and HSE staff are providing a very limited remote physiotherapy service, whereby they instruct parents in what to do while they can see the child. It is not a hands-on therapy. For the most part, physiotherapy and all other therapies are about developing the capacity of parents to deliver them on an ongoing basis rather than what a child gets at a particular session and being able to maximise the input of the therapy and advice. Service provision has been extremely limited.

There has been a significant issue with HSE staff and HSE-funded staff being redeployed to Covid swabbing centres or to Citywest. We need all of the professional therapy staff who were redeployed for Covid-related activities to return to their normal posts. There are also ongoing issues with the provision of therapy, which will be compounded by issues in the HSE where there are extensive waiting lists for all types of therapy provision. The fear is that without serious investment in additional therapy staff who have been identified as being needed, more and more children will miss out and waiting lists will become more extensive.

When the schools were closed in March, it was a blanket closure order. Every single school in the country had to shut, regardless of the type of school it was. That was the simplest thing to do. Obviously some schools are different, such as special needs schools.

I am aware of children being taught in groups of two or through one to one tutoring. Clearly, the risk is different with smaller groups of people. It may be greater with different behaviour types. In reopening the schools the risks should be looked at. Has Inclusion Ireland had any engagement with the National Council for Special Education or the Department of Education and Skills on the reopening of schools, taking into account the various risk profiles with much smaller classes, shorter days or better ventilated rooms rather than every school being closed or reopened? Has there been engagement with the Department of Education and Skills on risk reduction that could help with smaller classes?

Mr. Mark O'Connor

The simple answer to the question is that we have not had that engagement nor has it been sought. As Mr. Egan said, we conducted a fairly extensive survey of families and asked their opinions on education and how they were coping in the absence of their children accessing school. We sent that to the Minister and asked to have a meeting to discuss some of these issues. We have not had a response on that yet. We attended a briefing with the Department but it was not a consultative briefing. It was very much to tell us what it was doing. With regard to special schools, we have highlighted in our report and our submissions that while obviously public health guidelines must be adhered to, in special schools quite a lot of children are educated in smaller groups so social distancing might not be as big an issue. We might have a typical classroom with between four and six children and a couple of SNAs and a teacher. I will hand over to my colleague, Ms Dempsey, who wants to comment on this.

Ms Lorraine Dempsey

All businesses were sent out the return to work safely protocol, which also covers schools. The day before yesterday, schools were circulated with another document from the Department on the school Covid-19 response guidance for the summer programme. Much of what is in it can be got off the yellow posters, with the exception that mask wearing will not be a predominant feature when those schools hosting the school-based summer programme return next Monday. This morning, I was on the Luas for the first time in two months. I understand that from next week wearing a mask will be compulsory on the Luas but the Department has deemed they will not be needed in our schools.

With regard to planning for schools, particularly special schools and special classes, special classes typically have six pupils in a mainstream school and special schools have various profiles. Each class might have anywhere between four and 11 children, depending on the type of profile of the children in the room. They might have a teacher and a minimum of two assistants. Some might have three or four assistants, depending on the complexity of the needs of the children. Other classes are more nurse-led units for extremely medically complex children with a profound level of disability. I have visited several special schools. Some are in very new modern buildings with wide spacious classrooms where desks can be spaced out and social distancing can be managed to minimise contact, unless direct contact is needed for personal care or to guide a student in the educational programme. I have also been to special schools that are ramshackle add-ons, with corridors that have been subdivided to squeeze in another child with an SNA and teacher, where courtyards have been roofed over to get in another special class and where people have to go through one classroom to get to another.

Certain schools will have a huge problem over the summer and a great body of work will be required to be able to provide a safe environment not just for our children but also the staff who will be working with them. If they go sick our children will not have anybody to care for them or provide an education to them. We implore the Department look clearly at supporting the schools with the resources they need to open up safely. We all want our children back in schools but we also recognise the risks. Infection-control measures will be very important as will ensuring schools have an adequate quantity of personal protective equipment where it is required, particularly for children who need regular contact. Perhaps the idea of not instructing teachers and SNAs to wear masks means the Department will supply adequate personal protective equipment to those who need direct contact.

My child relies on an SNA for full support to access her educational programme. Many parents will testify that it involves extremely close contact. SNAs sit beside the child so it is imperative that we wear PPE on public transport where there are seats that are banked for social distancing. My child, SNAs and teachers all have a right to be safe when schools return.

Can the witnesses put in context the school lives that children with additional needs lead? There is a tendency to assume that everything is working well and that this July provision debate comes in an extreme circumstance, which is why we are discussing it. Can the witnesses speak to the reality experienced by parents who cannot find a school place? Can they speak to the waiting lists that are there for basic interventions that can often last as long as five years? I have documentation here from constituents of mine, one of whom has a daughter aged six who has been on the waiting list for two years for a basic intervention. She has autism and the letter from the HSE states in black and white that the waiting list for Beechpark services is five years long.

Can the witnesses speak to the fact that many parents go from school to school trying to get a school place and can be and are turned down? Can the witnesses speak to the number of times the Minister has invoked his right under the Education (Admission to Schools) Act 2018 to instruct a school to open a unit? Can the witnesses speak to the fact that because of the constitutional reality, the Department of Education and Skills abdicates its responsibility and puts the onus on parents to find a school place for their children and that special educational needs organisers, SENOs, hand a list of schools to parents and basically abandon them at that point? We have parents who have been to 15, 16, 17 and 18 schools looking for a school place for their children.

Can the witnesses speak to the fact that parents become campaigners when they do not want to be campaigners? They need the State to defend and protect them and to care for them. What happens is that they suffer huge levels of exhaustion because at one point, one is dealing with a challenge in one's family life where someone has a diagnosis that has to be dealt with and learned about and then overnight and at the same time, one becomes a campaigner for services that are not there.

I completely agree with where the Deputy is going but I remind him that this session is specifically about the response to Covid-19, rather than the broader issue of services for children with additional needs.

I am not seeking to take away from the valid points the Deputy is making in that regard.

That is fine. I will bring it back to that context so. Given the context of the deficiency of services and of State provision for children with additional needs, how do the witnesses reflect on how these issues can be addressed in the long term in terms of the July provision and of schools returning in September?

Mr. Mark O'Connor

It is a difficult issue and I agree with everything the Deputy said. I am aware of many of the issues that pertain in his constituency. Even as recently as last week, I met with a group of parents from Involve Autism. Those parents are in Dublin 2, Dublin 4 and Dublin 6 and the service provision for their children is virtually non-existent. That brings me back to the fact that the Minister has asked the NCSE to prepare reports on those schools and on what kind of provision is there. That has not happened because of Covid-19. One might argue that it was not happening anyway and it should have happened in years gone by but it has not happened because of Covid-19.

I refer to the waiting lists for vital therapy services. Going back to what was said earlier, the research shows that people will always make gains in life with treatment but children with disabilities have a golden window of opportunity between the age of three and six where significant gains can be made. As my colleague, Ms Dempsey, said, many of these therapists have been put into contact tracing and Covid-19 testing and so forth, which is vital work.

We urge, however, that those folks be redeployed because in Ireland we seem to have flattened the curve. What that will tell us, however, is that waiting lists have just got longer and longer. While in an ideal world these therapy services should be delivered face to face, we have engaged with various therapists to provide information to families on our Facebook Live page as to what they can do during the Covid period. These guys are at the forefront of physiotherapy, occupational therapy and psychology. Some of them say a lot of this can be delivered virtually because in a lot of the programmes they deliver, if they are familiar with their patient or a child experiencing their services, they can give instructions and exercises to the parent, who can then go and carry them out. The waiting lists certainly have not improved during the Covid period. They were diabolical to begin with. If, however, there is proper innovation through proper telehealth, many more children will be able to be seen than have been previously.

I thank the witnesses. This is my second Covid session today. The first this morning concerned contact tracing and testing. Professor Mallon from UCD gave quite an interesting but worrying presentation in which he talked about the expectation of a second wave of the virus at some point in the autumn. Should such a scenario arise, what lessons would the Department of Education and Skills apply that would be different from what happened in March? What do the witnesses expect the Department to learn and apply to their special needs students should that situation arise in some schools, either regionally or on a county basis, or if even a mass lockdown has to happen again? What lessons should we learn and how should we apply them?

Ms Lorraine Dempsey

I will take that question. Looking at it at a micro level, what should we expect in schools when they return, and what would be wise of schools to do? Let us look at the preschool sector and the suggestions there, and other European countries and what they have done. They have engaged a pod-like system whereby, particularly where there are medically complex children in special schools, school classes should not really mix with one another. The staff who provide supports within class groups should not mix with other staff. There should possibly be staggered movement around the school that is managed in case there should be a further outbreak. It is not really a case of "should" because there will inevitably be an outbreak in the winter period.

We have learned a lot, including that the whole country does not need to shut down and that we should have the systems in place to manage any outbreak at a micro and local level initially. Individual schools need to look at having a way to militate against the spread of Covid should a staff member or child introduce it into the school environment. Again, it is a matter of stringent handwashing and having the supports and resources from the Department of Education and Skills. If that means additional staff to split up classrooms, particularly for our vulnerable children, the Department should consider that in its budgetary planning. We have the highest numbers of children in our classrooms in the country. We advocate mainstreaming where possible. My colleague, Mr. O'Connor, mentioned the UN Convention on the Rights of Persons with Disabilities. Article 24 of the convention infers a right of all children to an inclusive educational experience. We need to treat all schools as if there are potentially vulnerable children within them for that to happen. They could be children who are insulin-dependent or children with cardiac issues. Then there are the staff themselves, who seem to be predominantly more impacted by Covid as adults. Having said that, we do not want adults spreading it to children, who then potentially bring it back asymptomatically to other vulnerable family members. That is imperative for that micro planning.

It is also important that at this stage that schools get guidance on what this should look like. There are serious delays in that. In the appendix to the Covid guidelines issued the other day, there is a protocol for staff returning to work, including a checklist, whereby the staff will sign to say they are not symptomatic, are feeling well, have not been party to contact tracing, etc. There is no suggestion, however, of doing the same for children returning to schools. Looking at the international experience, temperatures are checked and families have to state whether they have been in contact with a person through contact tracing.

The idea of closed bubbles is now quite common, particularly in special schools. The UK kept certain schools open to provide childcare for front-line staff. I will give one example of a London special school, which normally has 178 pupils. From March, when most of the schools closed down, this school provided support for 20 pupils on an average day but some days there were as few as three pupils who were supported by a core group of staff. They continued that support and now they are looking at expanding the number of children that are coming back into that special school in pods. I believe that the UK Government has indicated that from July they are going to be very loose with the return to school and the precautions that need to be taken. In schools across Europe that stayed open for the cohort of children with special educational needs and those who were considered vulnerable and for front-line workers, pupils were in school in very low numbers and they were very careful to ensure that there was not cross-mixing of staff and pupil groups. We have to look at that as we open up in September.

Given the lack of guidelines that we have at the moment, and I know we are expecting some today, is Ms Dempsey confident that when we reopen schools in September or even in a couple of weeks for the July summer provision programme that will be done in an effective manner that meets the needs of students, particularly those with special needs?

Ms Lorraine Dempsey

It is up to individual schools. Some schools are planning on opening for the summer programme this Monday. They have had to basically do their own background reading. It is important to note that there is the HSE return to work safety protocol, which businesses, schools and services have and which provides some guidance, but the Department of Education and Skills has been seriously lacking in this area.

I thank Inclusion Ireland for its presentation. It is probably no exaggeration to say that the past four months have been the most challenging for families and children with special needs. Those difficulties have been amplified by the lack of routine and structure. Those services were a lifeline for children and families and this was suddenly taken away. Some of the news reports have been deeply upsetting, even to watch. Families are at home, they are isolated, they have children with sometimes challenging behaviour and difficult needs and there is no outlet. Anybody looking at those reports would be very moved by the situation. I worked in special needs myself prior to getting elected and I know the staff and teachers have been deeply affected as well by the situation in the past four months. They are in a situation where they cannot give back to their pupils and the service users.

I have three questions. One is about the guidelines for July provision which are quite confusing for service users and schools themselves. Second, September day services are going to look very different from how the classroom looked in March. I am not sure if anybody can answer this question, but there are some students and some children who will take a considerable amount of time to come back to any sort of educational setting because of the complicated needs relating to the public health emergency. They might never come back to that school setting or day service. In those situations, resources must be put in place for families who find themselves in a position where their child cannot access any services outside the home. That is the most challenging of all. Could the witnesses give some sort of guidance on those questions?

Mr. Mark O'Connor

I will touch on them and I thank the Deputy for his questions. One of the difficulties with going back in September, and this is an issue we have campaigned on for quite a number of years in Inclusion Ireland, is that there are approximately 109,000 children in supersized classes of 30+ in mainstream schools.

The pupil-teacher ratio shows a certain amount of what we need to know. Some 109,000, which is approximately 20%, of primary school pupils are in a class of 30 or more. That will be extremely difficult for the Department.

The Deputy mentioned resources. The only way to get those people back in is to have additional space for social distancing depending on what the public health guidelines are like at the time. That may entail additional teaching resources as well as physical space.

The guidelines for the summer programme or July provision only came out yesterday. As we mentioned already, the Department's previous communication has been characterised by mixed messages that have served to confuse parents. Inclusion Ireland has had contact from hundreds of parents who do not know how to go about the system and all of that.

I will deal with a final point before handing over to my colleague, Ms Dempsey. A number of children who are medically frail attend schools. As of two weeks ago when we asked the Department, no provision had been made for them. We urge it to extend the home-tuition programme to these children because a significant number of children will not be able to attend school in the absence of a vaccine or complete suppression of Covid-19, as Mr. Egan has stated.

Ms Lorraine Dempsey

I wish to come back on the third point about the children who cannot come back. I know Deputy Ó Ríordáin was alluding to the children who are just not in school in the first place because they cannot find a school place or where school places have been very challenging, and they have faced expulsion even from special schools. A significant proportion of children would normally not qualify for the home-tuition scheme. This is another departmental scheme usually for children who either for medical needs or because they do not have a school place would qualify. We need to extend that kind of medical category provision for children where it is assessed as not being safe for them to come back in September for the winter period. Parents of children with extremely complex medical conditions or profound disabilities have stated that winter is already a challenge with the winter vomiting bug, the flu and all the other viruses that hit schools. These children can easily end up in intensive care in our paediatric hospitals. The concern is real. It is already lived experience with other viruses.

Other children are awaiting complex surgeries for conditions such as scoliosis or heart surgery where to get any viral infection at this stage would seriously delay their surgery dates. Some parents this summer simply will not risk their children's accessing the summer scheme despite their needing it or bringing them back into school in September because they do not want to jeopardise any medical pathways or appointments relating to surgery. The Department needs to look ahead at the likely number of children and the capacity of the different school environments to cater safely for their needs, taking into account the psychosocial aspect of children needing to mix.

It is complex and certainly needs to be looked at now. For this cohort or indeed for children receiving cancer treatment or immunosuppressed because of drug regimes they are on, we have no indication that work is under way to cater for their needs or indeed ramping up a school nursing programme to ensure there is a higher level of infection-control participation within special schools where there are very compromised children.

Can I be heard in committee room 1? I take the silence as a "No". Hopefully, we will be able to resolve that. In the meantime, I call Deputy Shanahan. Hopefully, he can be heard in committee room 1.

I thank the members of Inclusion Ireland for their participation today. I want to get their opinion on something discussed earlier, the issue of the exclusion of children with Down's syndrome from the July provision programme. I have tabled a motion to allow their representatives to appear before the committee. Do the witnesses have any insight as to why this group of children has been excluded?

Mr. Mark O'Connor

We do not know. At a briefing, the Department had indicated that all children with Down's syndrome would be allowed to attend it and then when more detailed information on the scheme came out, it curtailed that to primary school children.

We have no idea why that is. There is no magic button and nothing magic happens at 13 years of age. It is the same for children with intellectual disabilities and children who attend certain special classes in primary school. They can attend primary school but not second level. We simply do not know what occurs at 13 years of age that excludes them from the scheme.

The witnesses mentioned the small number of schools that operate in the country and the school transport system, which I presume is largely operated by private operators under public service obligations, PSOs. I have already raised some of the PSO issues in this House and the Minister for Transport, Tourism and Sport is yet to signal any specific funding to cover the PSOs for school transport. Have the witnesses had any engagement yet with the Department of Transport, Tourism and Sport on the likely scenario for the return to schools in September?

Ms Lorraine Dempsey

We are quite concerned about the special school transport scheme. We have already explained why it is imperative logistically to get children to school, considering the geographic spread of special schools in particular, the areas they cover and the extensive travelling times certain children have to undergo. In 2019 the Department of Public Expenditure and Reform raised a red flag over ballooning expenditure on the special school transport scheme. We are very fearful that, under the guise of Covid-19 and restrictions to the service, efforts will be made to curtail the funding for the special school transport scheme on the grounds that more parents are opting to bring the pupils in themselves or more grants can be provided to parents. Those grants would be accepted under duress.

Under normal circumstances the NCSE and the Department would be provided with the final number of new enrolments for special schools and classes and a public tendering process would be run over the summer for those special transport routes. If parents are lucky enough, towards the end of August, just before school starts, they might get a phone call to tell them who is going to turn up on Monday morning to pick up their child for special school. They are not always guaranteed to know who that is going to be, which is another issue. We have no indication of whether there are delays with the public tendering process which should be happening over the summer, or whether social distancing guidelines will have to be taken into account in the transport routes. If there are 17 children on a bus that is shared across two different special schools, which often happens, two school groupings and children who might be in different classes will be mixing. If we are going to minimise the spread of Covid should it enter into a school setting, the transport arrangements are essential. I reiterate concerns that this might be used as a means to reduce the funding for a particular budget that has already rung alarm bells for the Department of Public Expenditure and Reform.

I thank Ms Dempsey and I am sure everybody in this House will be watching this matter and trying to support Inclusion Ireland and the mainstream schools in it. Speaking of mainstream schools, they also mirror some of the challenges in special schools, such as the lack of sensory rooms, the lack of SNAs, SNAs acting like accountants by allocating hours to students in mainstream schools, the lack of a psychological assessment service, and only two assessments being offered on average to schools by the National Educational Psychological Service, NEPS. I recently raised these issues with the Minister for Health in this House. Is there any opportunity for Inclusion Ireland and for people who are trying to represent the mainstream area to come together and funnel all these challenges, which are largely the same, towards the Department?

Mr. Mark O'Connor

Absolutely. We engage with the Department regularly and raise many of these issues in our annual budget submissions. NEPS is a blunt instrument. Schools get their two assessments per 100 children and if a third child requires an assessment it has to be done privately. That does not necessarily mean the parents have deep pockets. They are quite often borrowing money to do these kinds of things. It is pretty much a blunt instrument.

We have campaigned on this over the years but we have met with the finite nature of the resources that are available.

Ms Lorraine Dempsey

On the point that all pupils are going to rely on-----

I am afraid we have to move on to the next speaker. I call Deputy Collins.

I thank Inclusion Ireland for being with us today. Covid restrictions have had a serious effect on all children but particularly those with special needs. Routine is of paramount importance for children with special needs and the disruption to their supports has caused distress for many children and their families. Many parents fear the lack of schooling during the past four months may cause regression in some children. Has a plan of action been drawn up to support all children and adolescents with special needs as they transition back to school in the coming months?

Mr. Mark O'Connor

If there is, we have not seen it. Obviously, the summer programme is a very welcome measure, even though there are significant shortfalls in it which we have already indicated in response to previous questions. Apart from this, we are not aware of it. In our own survey, we asked families what sort of supports they would like to see. Some indicated access to the summer programme, which is happening, and others indicated access to the teacher before they go back and perhaps some visits to the school in the week or two running up to going back to school. Having that contact from the teacher and the SNA would ease their way back in. However, we have not seen any plan from the Department as yet, although when the Department appears before the committee this afternoon, it might have something.

On 5 June, the Minister opened the summer provision programme for this year to include children with Down’s syndrome. It looks like there is no distinction between those attending preschool, primary school and post-primary school. Is this the case?

Mr. Mark O'Connor

That is what it looks like but when we look under the bonnet, we can see the difference. As we have already indicated, most children with Down’s syndrome at second level will not be able to access the scheme, or rather, to correct that, all children with Down’s syndrome at second level will not be able to access the scheme.

With regard to children in preschool, if children are moving from preschool to specialist provision, in other words, a special school or class, they can access it. However, many people want their children to attend mainstream schools. While they may have similar needs to someone in a special school or class, it is just that they want to go down that route and to attend their local school with their brothers and sisters and all of their neighbours. That is an aspiration we all have for our children in life. However, if they have chosen the mainstream route and they are moving from preschool into mainstream, they cannot access the scheme either.

Does Inclusion Ireland have concerns that, over the course of the coming week, the Minister, the officials and the Department will produce guidelines for the summer provision programme which may discriminate against a certain cohort of students with Down’s syndrome and are certainly not in keeping with the declaration made by the Minister on 5 June?

Mr. Mark O'Connor

People can often look at Inclusion Ireland and say that these guys are advocates and that, of course, they are going to say that. However, I go back to the policymaking arm of Government, the National Council for Special Education. In 2015, so this is not new news, the National Council for Special Education stated to the Department that it was not able to recommend the continuation of a scheme which is inequitable. That is what the policymaking people who will appear before the committee this afternoon said in 2015.

Many feel the summer provision programme proposed by the Department of Education and Skills is becoming more and more difficult every day. Many parents report that even though their child and primary school may be eligible to participate in this programme, they will not be able to avail of the opportunity if schools are not running the programme due to lack of guidelines and teacher and SNA unwillingness to participate. Does Inclusion Ireland believe this is going to be the case?

Ms Lorraine Dempsey

I got a letter from my daughter's special school the other day indicating the difficulties it has in terms of not having guidelines. It is similar to many letters parents have received in the past two weeks.

The other issue is opt-in from staff. Again, if one cannot provide the supports to staff to be able to opt in, such as paying them nearer the time they are working and providing childcare, thereby making it easier for them to say “Yes” and to opt in to the scheme safely, in the absence of guidelines many staff have fears around being able to opt in to the scheme.

To refer back to the numbers, only 200 out of 650 eligible schools have registered to provide the programme, but mainstream schools which have staff ready to go have been excluded from being able to offer it to children. Regarding the purpose of the school-based programme this year - it is not July provision but is called the summer programme - the intention of the Department is to reacquaint children with the school and learning environment and focus on transitioning to get them ready for school in September. For the most part, with consultations, it was saying that its preference was a predominantly school based programme.

To refer to statistics from last year, the majority of children have home-based programmes not because they work but because there are few schools that will engage in the extended summer programme. There has been a downward trend over the years of fewer schools engaging with it. There is a plethora of pre-existing issues with the schemes that Covid-19 has only compounded. Regarding the parents who are currently registered, I encourage parents to go to the www.education.ie summer provision programme website and to register their interest and follow the guidelines. Essentially, however, what we are all doing now is competing for a very small group of teachers and SNAs who have indicated in their different areas that they are available for home-based provision. Taking the 10,000 children who normally engage with these programmes and the children who do not find tutors in a normal year and promising that it will be extended out to over 20,000 children - indeed, yesterday the Minister stated that there is capacity for up to 24,000 children to avail of the scheme - if there is only a small pool of people who will be able to provide it, whether in school or in the home, those numbers are simply fanciful.

Everybody quotes Dr. Michael Ryan saying that speed trumps perfection and that we need to get things out despite mistakes. What we have found with the Department is that there has been no speed and there are President Trump-like exaggerations in numbers. Certainly, we are very far removed from any form of perfection for this summer. It is devastating for families.

Can Ms Dempsey hear me properly in the committee room?

Ms Lorraine Dempsey

Yes.

Thank you. I will move to the next speaker. Deputy Michael Collins can speak again later. Deputy Foley has ten minutes.

I welcome the witnesses and greatly value their contribution to this debate. First, I refer to the survey that Inclusion Ireland conducted between 30 April and 20 May in which 89% of respondents, and these are parents of children with additional needs, said that their children were missing school and a further 78% said that students were not motivated to learn or it was not easy or accessible for students with additional challenges to learn at home. I move from that to the summer scheme, formerly the July provision scheme. With that information one would anticipate that there would be a massive uptake, given the recognition that there is a great need for students to have an educational facility available to them. Last year, as was mentioned previously, 10,000 students participated in the July provision programme. This year there are approximately 14,000 participating with one programme or another, despite the Minister saying that there was capacity for 24,000 or 25,000.

Something has gone greatly wrong. Parents have recognised that there is a major need for students to be integrated once again into some form of education plan or programme, but the uptake is not there. I note the witnesses said in the report that it is poor planning, lack of guidance, school transport and a variety of things. I am interested to know at what point was Inclusion Ireland or parents, and I appreciate Ms Dempsey acknowledging that she is a parent, included in the discussion or negotiations for a programme such as the summer scheme.

Mr. Mark O'Connor

The short answer is that we were not.

I find that shocking.

Mr. Mark O'Connor

Yes.

It is appalling that service users, for want of a better phrase, were not in any way negotiated with, included or involved in putting together a programme that would work for children with additional needs.

Mr. Mark O'Connor

We were initially brought into a briefing by the Department at which officials said that the scheme was going to be limited to children in special schools and special classes only.

I am sorry to interrupt Mr. O'Connor but can I take it that this was a briefing after the fact and that Inclusion Ireland was just being informed of decisions that had already been made?

Mr. Mark O'Connor

That is where it gets interesting. All of our members knew that we were going to that meeting. We issued a note about the meeting to our membership and there was a humungous backlash in the media and on social media. That evening, the Department decided to widen the scheme. This was good news but it is also where the confusion started. Approximately two weeks later, we were asked to attend another briefing. We were told at that point, "This is the scheme". We thought it had been widened at that time but other information became available over the weekend that made it clear that certain cohorts of children that had been discussed were to be excluded from the scheme. It is definitely not correct to say that people were consulted or that the views of parents were sought.

Is that the organisation's ongoing experience? What is its experience of dealing with the Department and of representing parents and children with additional needs and particular challenges? What is its experience of being included in negotiations, discussions and projected planning to meet existing needs and challenges?

Mr. Mark O'Connor

From experience, we may be asked for a written submission on an issue. We are generally brought into a room and given a presentation on what the Department has decided to do and then that is what it does. There is rarely a process of ongoing input with the Department. Some other Departments do this better. The HSE, for example, has ongoing working groups. That would be rare enough for the Department of Education and Skills. Ms Dempsey may wish to come in on that point.

Ms Lorraine Dempsey

I have experience of engaging with a number of different Departments while wearing different hats over the years. When some Departments are looking at developing new policies and initiatives, they are inclined to take a co-design approach very early on to get input from stakeholders. Over the years, our experience with the Department of Education and Skills has been, as Mr. O'Connor indicated, that one is informed of the direction the Department is going and that organisations are used more as a sounding board rather than being engaged with at the beginning. Inclusion Ireland represents 66,000 people with intellectual disabilities and their family members. We have a substantial mechanism to get the voices of parents to the table. For example, over a two-week period and under difficult circumstances, we had more than 1,000 responses to the survey that was just conducted. It is not that those voices and those opinions, which can sometimes contradict those of parents, cannot be brought to the table; it is just that they are brought to the table a bit too late in the day.

I will go back to a question Deputy Ó Laoghaire asked and about which he spoke to the Minister yesterday: the question of capacity and of what the Department did to engage with educational stakeholders and schools to see how many schools and staff members were likely to opt in before this programme was launched and before up to 24,000 families were promised that their children would have some level of provision over the summer.

What normally happens is that the Department opens up applications for the July provision programme in April and those applications are then processed over a two-month period. Post-primary pupils then engage in July provision from the month of June and primary children engage for the month of July. Again, a limited number normally qualify. Knowing that public health guidelines and lockdown measures could be alleviated to such a degree that these schemes could be rolled out, I would have expected the Department to engage from April. This is similar to the concerns I have about special school transport. If the Department is not on top of this matter now, we are going to have difficulties in September. It is an issue of process with regard to the way certain Departments have conducted themselves during the Covid crisis. Some Departments have gone into fifth gear while others have kept to their standard mode of addressing issues.

Ms Dempsey speaks very eloquently on behalf of Inclusion Ireland and the parents it represents. If I were one of those parents listening to this discussion at home, the distinct impression I would get is that, when it comes to the witnesses' engagement with the Department of Education and Skills, they were not listened to or heard and were brought in only after the fact. Is that an accurate summation?

Ms Lorraine Dempsey

Going back to what happened over the past two weeks, there were two separate meetings between the Department and educational stakeholders, including Inclusion Ireland. At the first meeting, the departmental officials stated that they would be severely restricted in what they could do and would only be allowing special schools and special classes to run the programme this year. Approximately an hour and three quarters later, the Minister was in this House stating that the programme would be opened up to all children with Down's syndrome in a very much expanded group. Whatever the communication issues were between the officials and the Minister, we are not sure. They were at least to our advantage in this instance in that we were told at the meeting the following week that the scheme was to be very much broadened out. However, as Mr. O'Connor explained, over the course of the weekend, as parents were looking at the criteria, they realised that all children with a mild to moderate intellectual disability in post-primary mainstream provision, regardless of their syndrome, were excluded.

I have one more question for Ms Dempsey. We know now from listening to the witnesses where they were before and where they are now. It is clear that the system needs to change. What one thing would they like to see changed, going forward, in their dealings with the Department?

Ms Lorraine Dempsey

A more collaborative and co-design approach from very early on would be helpful and has worked well in other Departments. It is about listening to the voice of the child and finding out what it is that children actually want. We know from our own survey of parents that 10% or 11% of children are happier at home. The stresses of being in the school environment created a crisis for them on an ongoing basis. There were bullying issues and their mental health was suffering. It is imperative to listen to the voice of children. While it is okay for us parents to talk, we need to be able to understand what our children want as well. One of the key things that stood out for me from the survey was the fact that more than 80% of children missed their friends and the school environment. During the first couple of weeks of the lockdown, the question that was repeated to me every minute was "When is the virus over?". My daughter wanted to go to school and see her friends.

I am afraid I am out of time. I thank the witnesses for answering my queries.

I thank the witnesses from Inclusion Ireland for their presentations. I was really impressed with Mr. Egan's opening statement, in which he said: "Some parents noted that their child presents with behaviours that can be challenging or he or she has poor attention skills which require the support of a skilled teacher." That sums up everything we have been discussing over the past number of years.

I have done a bit of work around autism provision and with parents of children with autism. How I came to that was because of the number of people, year on year, who contact us because they cannot get an ASD school place for their child, or an assessment, a particular therapy or school transport. I came to the conclusion, long before Covid ever was here, that there is a two-tier education system, whether or not people want to admit it. It should not be the case but it is. If a child has an additional need, he or she is basically a second-class citizen in the education system. That is a very sorry thing to have to say but it has been my experience from dealing with the parents in question. That is not to take away from the very good schools and very good teachers who do a huge amount of good work in this area. The expectation that a child with an additional need can wait forever for a school place or that it is okay for a child to have to be driven for two hours to and from school every single day is not acceptable.

When one is among the last to speak in debates like this, many issues have already been covered, but I have several questions for the witnesses. They note in their submission that the National Council for Special Education previously expressed concern about the scheme being open to challenge on equal status grounds. I do not think anybody should have to take that case but we have seen over the years in this country that it sometimes take a court case to get people to wake up. I know it is a different thing but if we look at CervicalCheck, for example, I often wonder whether we would ever have heard about what happened there if the matter had not been brought before the courts.

Has Inclusion Ireland ever given consideration to that? I accept that cost would be an issue and it is not something it should have to do, but I would welcome the opinions of the witnesses on that first.

Mr. Mark O'Connor

I will take the question. I reiterate that Inclusion Ireland has long held the belief that the scheme is discriminatory in its nature but it is not only us; the National Council for Special Education, NCSE, which provides policy advice for the Minister for Education and Skills on special education needs, has stated the scheme is inequitable in its current guise. That has not changed. The NCSE tells us that the research shows that children with other intellectual disabilities, not just autism and severe and profound disabilities, can suffer educational regression. There is no reason they should be excluded from the scheme.

In response to what the Deputy and others have said, sometimes when one has a child with a disability a parallel universe opens up when that disability is confirmed. One goes into what we term "special land" and services can sometimes be difficult to access. Parents often characterise it as a constant fight for supports, be they financial supports from the State or educational and health supports.

Specifically regarding the July provision scheme, a couple of parents came to us some years back who were fed up with the situation whereby their children could not access the scheme. They took a case to the Equality Tribunal, which is now in the Workplace Relations Commission. It took a long time to get going but eventually in the summer of last year the case went to the High Court, at which time the Minister settled the case so a judgment was not made. The two children with Down's syndrome were allowed to access the July provision scheme they were not previously allowed to access. This summer allowed the Minister to build on that and to open up the scheme fully. We welcome the bit that it has been opened up but we urge him to push it that extra little bit and to include young people who are in second level education. It would not have been too much more ground to cede on the scheme. While there is still time, we urge the Minister to do that.

That leads me to my second question. On Tuesday, the committee discussed the early years childcare sector which is reopening on Monday. We all accept that there will be challenges, difficulties and teething problems for everybody reopening at the moment. Given that other sectors are reopening, there is a way to provide the July provision to all children with additional needs rather than to just limit it. Do the witnesses think it could realistically be extended? What are the barriers? Even before Covid I heard that a lot of schools did not want to sign up for the scheme. I know it is not possible to say for definite what the reasons are for that, but do the witnesses have opinions on it or even anecdotal evidence? Does the scheme present difficulties for schools? I have heard that if a school volunteers to do it, staff do not get paid until November and there are difficulties in that regard. Is there a way to make the scheme more accessible and easier? Do the witnesses believe it can be done this summer? That would be the one clear way to indicate that there is concern about children with additional needs and that they are as important as everybody else. There is no point in the Minister or the Department saying they empathise and that they know it is difficult for parents and children. The only way to address the issue is through action. This could be one way of doing that and showing the Government is serious about it. I would welcome the views of the witnesses in that regard.

Ms Lorraine Dempsey

What has been really important about the opportunity today is to have such a level of focus on the summer programme and refer back to the normal July provision that would take place. We have moved up a few steps in terms of broadening the scheme. We welcome the recognition by the Minister and the Department of Education and Skills that children suffer regression and it is not just children with autism or children on the severe to profound end of intellectual disabilities. It is a big step and it is something we have been looking for.

In terms of the operation of the scheme and making it a reality, the teaching unions and managerial bodies would be best placed to answer that, but we do know from the public domain that pay is an issue.

SNAs traditionally cannot deliver home-based provision but they can this year. Both for SNAs and tutors, when the forms are completed by the parents and the tutors at the end of August and submitted to the Department, they will not be paid until November. Again, going back to the point about childcare, if one needs to engage a childminder to look after children during July, the childminder will not accept that the parent will not pay them until November or December for that work. It acts as a disincentive. I know people have been talking about having to get into the higher tax brackets.

For schools, it is about supporting and encouraging them to be in a position to deliver. Schools will say that staff can be burned out, particularly in special schools where a high intensity of supports are given to children. There have to be different ways of encouraging staff and enabling them to deliver the July provision or the summer scheme.

One good point about this summer is the fact that the Department has recognised the scheme needs to be flexible. Instead of it having to be delivered only in July, this summer it can be delivered any time from 29 June right up to 21 August. How it is delivered can be very flexible. There is a maximum number of hours of 40 but that can be delivered by breaking up the weeks if suitable for the tutor to engage in it. We need to hold on to the flexibility. However, it has just not been enough this year to put this programme together so late in the day. Not having the guidelines for the schools has played a major factor. The management bodies and the education unions would be better able to answer those questions.

Parents have told me - I have also seen it - that they have to go on social media looking for tutors. Sometimes, when one puts in a parliamentary question, one gets an answer back that everything is fine and rosy in the garden when the experience is a lot different. Is there assistance available from the NCSE or from SENOs to assist people in finding tutors? From what I have seen and heard, it is parents who really have to do all the groundwork and legwork. Not every parent has the capacity to do that.

Mr. Mark O'Connor

Parents have to do all the legwork. In fairness this year, however, the NCSE has produced a document that indicates - again it is only a sign-posting exercise - the websites where tutors will advertise that they can work on the July provision scheme.

This year the scheme has changed slightly. Most years, one would ordinarily express an interest in taking part in the scheme and then later on the Department would send an email asking one to fully apply. This year, that system is not there. Without the proper guidance, many parents do not realise that they have to print off the actual claim form and that the principal has to sign it. That is their authorisation to go ahead to get a tutor. The parents then have to see the tutor's Garda clearance, or proof of it, signed by a notary, a solicitor or a commissioner of oaths. While there is a rationale for the Garda vetting, these are the barriers and difficulties that parents face. At least this year there is a bit of guidance on where parents can go to look for tutors. It is very much, however, that the parent has to go out and find somebody.

I have met representatives from Inclusion Ireland before at a number of fora. Is there a case for a national forum for itself, along with organisations such as Down Syndrome Ireland, whereby they could be statutory consultees on major policy issues like this?

Ms Lorraine Dempsey

Under the Education Act, the Department of Education and Skills has a statutory obligation to consult with the National Parents Council Primary and the National Parents Council Post Primary. Beyond that, it is whoever else is deemed to get on the list for consultation groups. Traditionally, Inclusion Ireland would be in consultation groups with other disability organisations. There would be a teachers consultation group with a therapist or health led consultation group. As well as going back to how other Departments get involved in more co-design with stakeholders early on in these matters, there is room for the Department to have a national forum made up of a broader spectrum of groups.

Mr. Mark O'Connor

I will finalise the last piece. With regard to many of the Department's consultative pieces that we experienced in recent years, it is pretty much a fait accompli when one is asked one's opinion on something. I will cite one example. When it changed over the resource teaching hours scheme everybody in the room would have very much advocated for an appeals mechanism for when a parent was not happy with the number of hours allocated to their child. It was unanimous within the room, but the Department chose not to go with it. That is one example. If the Department was to consult in a meaningful way it would be very welcome.

One of the other partners coming into the committee this afternoon along with the Department is the National Council for Special Education, NCSE. In fairness to the NCSE, its consultative processes when developing policy advice are generally quite significant. It will meet with us and invite written submissions and sometimes one can see the submissions we have made reflected in the NCSE policy advice.

Taking on board what Mr. O'Connor said on acknowledging everybody's role, perhaps this committee will have an opportunity to make recommendations as to the future of services. Perhaps we could all think a bit more about future plans or things we ought to include. Some of the criticisms made could have been avoided if a forum and statutory consultation were in place. I am aware that one cannot do it every day of the week but it could happen for major policy initiatives.

I wish to raise some other issues and to support what other members have said. I have a constituent who has three children each of whom has a diagnosis of autism. Pre-Covid-19 they would have had 120 hours, which is what they had last year, but this year they are getting 100 hours. This is a significant disadvantage to those children. One of the children attends an Irish language school and needs the additional support. Normally, children would come from a primary school with this diagnosis, and pre-Covid-19 they would have had the normal integration programme with much new learning to be done. There is a huge lacuna this year, notwithstanding the good things that are being done, where a family such as this are being cut by 20 hours and they cannot get the service they need. This is a huge issue. There is also the issue of paying for a tutor. The mother wants to make the arrangement as she did last year but she does not have a guarantee of the income.

The second case I want to make is for a child who needs to attend a special school in Drumcar, the parent lives in Drogheda and the family do not have a car and do not have access to public transport. Their needs are met, if they can afford it, with a taxi costing €35 each way. This family would have to pay €70 per day to get their child to that service. They are told they can be recompensed at the end of that period - in other words, come August they will get back the €1,400 they had paid. They cannot, however, afford to pay. There is a huge issue where parents cannot provide the transport and cannot afford to pay for it and, therefore, cannot take up the place. I know Mr. O'Connor is aware of the special school, St. Mary's in Drumcar. This is a huge disadvantage for some families.

On the rights of these children, will Mr. O'Connor please articulate what this committee should recommend in additional supports and rights? These rights should be there automatically and the families should not have to beg or fight for them. The rights should be there by fact and by definition.

Mr. Mark O'Connor

I am from County Louth and am quite familiar with Drumcar and the geography there.

A parent such as the one the Deputy described who must get their child from Drogheda to Drumcar would be lucky to be able to reclaim the money straight after the scheme. As my colleague, Ms Dempsey, has indicated, the transport grant is often not made available until the end of September or October.

On wider socioeconomic issues, we know that when a household member has a disability, there is a greater likelihood of that household experiencing or being at risk of poverty. They do not have €1,400 just sitting in a drawer to pay out on taxis and then reclaim several months later.

They do not have it at all.

Mr. Mark O'Connor

Several parents, not just in County Louth but dotted around the country, have indicated that to us anecdotally that because there is no transport available, they have no way of getting their child to the placement. It boils down to one of the issues raised by Deputy Ó Ríordáin, that is, a lack of supported school placements. We have found that in County Louth, to which the Deputy referred, County Dublin and elsewhere, children are transported from one area to another, while children from the latter area are transported to the first location because that is where the school places were available at the time they were looking for them. There is a significant amount of transporting of children. If we were to urge the Department to do one thing in respect of the summer scheme and in light of the Covid restrictions, it would be to make transport available for families in order to ensure children can get to their placements. As the Deputy mentioned, these children have rights, including a statutory right to education. There is no doubt that the Covid-19 period has been extremely difficult, but that right has not disappeared into the ether.

I will finish on this. Basically, if a family does not have transport, as is the case for the family to which I referred, the Department should meet the cost in advance and make those arrangements. It is entirely unfair and unacceptable for a child with significant disabilities, as in the case I have mentioned, to be placed at further disadvantage as a result of being offered a place which sounds great, but to which he or she cannot get. That is not acceptable.

Obviously, this period has been very difficult for everybody. Businesses have lost money, but they will be able to make that money back in the future. People have put on weight, but they will be able to lose it. However, some children are not just failing to develop - they are regressing. My daughter was born recently and it is amazing to watch her develop. I cannot imagine what it must be like to watch one's child not just fail to develop, but regress. I acknowledge that there are shortages everywhere. The Clare Crusaders Children's Clinic in Ennis is inundated with requests from parents who are desperate to get help because they are watching their children regress and do not know whether they will ever get them to make progress. In light of the shortage of SNAs, could the Government consider using occupational therapists, speech therapists and specialist nurses to provide July provision, or would their skill sets be unsuited to the provision of that service?

Ms Lorraine Dempsey

They simply would not be available to do it. Many of them have been redeployed to Covid-specific work. We are waiting for the HSE to engage in a process of getting them back into their original posts. I do not think their involvement in July provision would necessarily be feasible. The issues around childcare, being paid late in the autumn, being put into a higher tax bracket and all the other disincentives that exist would just be extended to another group of people. That is not to say that their involvement would not be advantageous. There is a related issue, namely, that there is already a shortage of all the categories of worker the Chairman mentioned. The irony of tomorrow being the second anniversary of my sitting in one of these committee rooms and raising issues around the provision of therapy and educational supports to children is not lost on me. At the time, no new children's disability network team had been established since 2014. Two years later, there still has been no such new team formed.

We have a severe shortage of the people the Chairman refers to and we require heavy investment to provide that scaffolding around parents, now moreso than ever. The Chairman touched on the fact that he has a new baby and how one appreciates watching one's child develop. When one becomes a parent of a child with special needs any minor achievement is massive and I cannot overstate that. Parents have had to deal with much emotional upset over the past couple of months, seeing children not being able to sleep, destroying their houses or assaulting siblings and not through any fault of their child but arising out of the frustrations and lack of supports. The lack of access to school and therapists over the past three months has been catastrophic and I cannot state that enough.

I do not know what to say in response. As a State, we do need to say something. We need to be aware of the impact that the curtailment of services is having on the most vulnerable and I cannot put it further than that. I thank the witnesses for coming in today and for sharing their experience and knowledge with us.

Sitting suspended at 1.50 p.m. and resumed at 2.30 p.m.
Deputy David Cullinane took the Chair.