Official Report: Minutes of Evidence

The Chairperson (Mr Mathison): I welcome you all to the Committee today. I am sure that you will provide more information about your organisation and the work that it does in the community with children and families. Joining us today from SHINE Autism Support Group are Linda Harvey, the chairperson; Suzanne O'Hara, the treasurer; and Annette Park, the secretary. You are all very welcome, and thank you for giving up your time. We are keen to hear a broad range of perspectives from stakeholders, not just the statutory agencies, in the inquiry. It is great to have a community and voluntary sector perspective today.

I will pass over to you for any opening remarks. We will allow up to 10 minutes for that, and then we will move to questions from members. I ask members and witnesses, as far as possible, to keep the question and answer from each member to a five-minute window of time, so that we can get through all the evidence.

Ms Linda Harvey (SHINE Autism Support Group): Thank you. I am one of the founders and currently the chairperson of SHINE Autism Support Group. I think that everybody received a brief outline of what SHINE is and how long it has been running. It has actually been running for 15 years but, as a registered charity, for 10 years. We provide advice and support for families living in the Belfast area. Thank you for letting us present today. It is very important that the people on the ground have their say and that you get to hear about what our children and young people experience every day of their lives. It is very hard to put that across on paper. We have a lot of stories. Before we came here today, I asked some of our parents to send me details of what they are experiencing at the minute. Later, if you do not mind, I will go through a few case studies on what is happening with our parents.

As I said, 15 years ago, we started SHINE. When my son was diagnosed, I was given three training sessions on autism. Then I said, "What do I do when I am finished that?", and they said, "That is it". The only way to get any resources is to set something up yourself, so that is what I and two other parents did. We had hoped that, 15 years later, services would be a lot better today, but they have got a lot worse. Waiting times have increased tenfold. Some of our children have to wait for five years for a diagnosis. During that time, they can wait for up to two years for a statement as well, because schools are only allowed so many educational psychologist visits per year, so they prioritise. I have never met a child with autism who did not require some extra support at school. The fact that they have a diagnosis should mean that they get automatic additional support rather than having to jump through hoops.

All of us here today are parents of children with autism. It feels as though you are constantly fighting the system, from day 1 when you do not know anything about autism to finding out what it is and then being told, "Well, you will get a diagnosis down the line". I waited for two years, and that was 15 years ago. Now, the waiting list is up to five years. Those children are suffering in school.

This week, I was asked to come to a school and work freely, which I agreed to do, with a child in primary 2 who has no diagnosis and no statement. From speaking to his parents, I know that he has been displaying behaviours since he was six months old. He is now in primary 2, without provision and without anything in place for him.

SHINE runs summer schemes, because, as parents will tell you, the eight weeks of summer are like Groundhog Day for our children. When they go back to school after having had no routine for eight weeks, it is very difficult. Our summer scheme currently runs for two weeks for five- to 11-year-olds and two weeks for 11- to 18-year-olds. We provide a parent support group as well. From that, we have moved on to running a youth group for 11- to 18-year-olds every Thursday.

I do not know whether you want to say anything else, Suzanne.

Ms Suzanne O'Hara (SHINE Autism Support Group): My son will be 15 in December. He is severely autistic, has severe learning difficulties and is non-verbal. He is in special needs education. I rely on SHINE during the summer and throughout the year. When Anthony was diagnosed, I was handed a leaflet about bringing him to a donkey sanctuary. That is what I was handed when he was diagnosed. I knew nothing about autism whatsoever. It was all new to me. A girl told me about SHINE, so I went along, and, when I came out, I felt as though the weight of the world had been lifted off my shoulders, because I knew that I was not on my own. There were other people in the same boat as me and who had children like my son. Anthony's autism is maybe more severe than that of some of the children in SHINE. Without the summer scheme and that support, he lashes out, because he is off for eight weeks and is totally out of his comfort zone. For the two weeks that he is in SHINE, he is calm and happy. It is not school — the routine of school is not there — but he still has the routine of going every day for the amount of time that he is there, and he absolutely loves it. There are also trips that we take them on when they are off for the summer and Halloween. It is a lifeline not only for me as a parent but for other parents. SHINE does a lot for our children.

The Chairperson (Mr Mathison): Annette, do you want to add anything by way of opening remarks?

Ms Annette Park (SHINE Autism Support Group): My son is now 23 years old. When he was in school, SHINE was my lifeline, because I really had nothing either when he was diagnosed. There was nothing, and nowhere to go. I then met Linda and Suzanne, and that is where we have got all the help. He has done brilliantly at SHINE, and all the support that I got meant that I felt that I was not on my own.

The Chairperson (Mr Mathison): Thank you, and thank you as well for sharing some of your personal experiences. It is not always easy in a context such as this to do that.

There is probably an issue about summer schemes. While that is not a statutory function of the Department of Education, it is something that it funds, and there are sometimes issues with the timing of that. I will maybe pick up on that in a minute.

You spoke about long waits for diagnoses and then long waits for statements. A lot of the messages that we get from the Department at the minute say, "Diagnosis shouldn't matter, and a statement shouldn't matter. We're all about providing support as soon as needs are presented". Can you speak to that regarding the parents whom you work with or indeed your own experiences? Do you see that borne out in reality in schools at the moment? When a need is presented, no matter what name is given to it or with no diagnosis, are you seeing services coming in to wrap around children?

Ms Harvey: Absolutely not. Some of the case studies that we deal with are current. They are what parents are experiencing today. One person was told, "You've no diagnosis, so we've nowhere to refer you on to". The child is then just left for up to five years. In school, there is no support if they do not have a statement. They do not need a diagnosis to get a statement. In fact, they are not a priority, and we see that all the time through our parents. They are not a priority because they do not have a diagnosis. It just goes round and round. Parents on the ground are not seeing support being put in unless there is a diagnosis or statement in place.

The Chairperson (Mr Mathison): We will hear from the Department and the Education Authority (EA) about how they plan to get to that place. They are telling us that that is what they want to do, and I think that everyone here would love to see that being the case. You work specifically with children with autism. For the families and the children whom you work with, if need was identified and support went in, what would make a difference in a child's educational journey from early years on through? Ideally, what should that support look like?

Ms Harvey: It has to be early intervention — it just has to be — and it is not. It is coming too late. The child who I am working with is in P2, and they are saying that he is probably not going to get a statement this year, so that child is going to be left. It has a detrimental effect on their mental health and confidence and on so much more. So much relies on the support. They are different children when they get their one-to-one support.

The other thing is that there are so many children now in mainstream who should not be in mainstream. They should be in special provision, and there are not enough spaces. We are opening units in schools all over, but, if you walk into any unit, you will see that the majority of those children should be in special provision. Some are not and are in social and communication units, which are suitable for some children, but they are also putting in people who do not get a place in special provision, and that is not suitable. In units that I deal with, there are only eight in the unit. I would say that half of those should be in special provision, but there are not the places, so they are just mocking up those units in schools all over, and they are given money to open units that are not suitable for the majority our children.

The Chairperson (Mr Mathison): That is something that we do hear. The appropriateness of the provision is key. I even hear from schools their frustration. They are maybe given funding to open a unit that is specifically for social and communication needs, for instance, but are having children placed there and that is not their primary need, and that is very frustrating for everybody.

Ms O'Hara: Some of the children in the units need one-to-one support, and they are not getting one-to-one support. It is maybe one in four. They are not getting what they need.

Ms Harvey: It is a cost-saving exercise, because they are not providing one-to-one support. I am hearing that classroom assistants or teaching assistants (TAs) are being asked, "How many hours has that child got? Well, then we will put in that same person, and we will give her another 15 hours". It is not about identifying how many hours are needed for the child; it is about the classroom assistant and how many hours they have already been allocated up to 35. If they have got 20 hours, they will give 15 hours to another one. That is not about the child. That is about the provision that is already there rather than recruiting somebody else to do the job that is needed.

The Chairperson (Mr Mathison): We can raise that sort of feedback with officials.

I do not want to take up too much time. I want to bring other members in, but I want to ask about summer schemes. That is a provision that you bring in. I corresponded with the Minister recently on summer schemes and asked how quickly he would be able to bring forward funding to give to special schools that are often asked to provide summer schemes in order to give them certainty. There was a sense that, until budgets are set, they would not commit to making it recurrent funding.

Do you have any sense of how long it would take to plan to deliver a summer scheme, if there was funding from the Department to do that? There is a question around whether the Minister should look at partnering with community and voluntary sector organisations. How much of a lead-in would you need, going from a standing start, if you were asked to deliver a summer scheme in July? How much notice would you need to make that happen?

Ms Harvey: We are old hands at it now, so, if we knew in January, we could run it for the summer. The Minister came to visit our teen summer scheme, and I was so excited thinking that that would get us on the map. He was so impressed with what we were doing. We have set up a couple of football teams, and he played a game of football. Then I got an email to say, "Here is a link to youth funding". I was so disappointed, because I really expected so much more.

The disappointment just keeps happening over and over again. As we stand, we do not have 1p. All our funding is depleted, and, until we get our returns in for everything, we cannot start planning anything. We have a youth group that runs 52 weeks a year. We are running that ourselves without any funds until the end of the year and we are told that we can reapply to Awards for All.

The Chairperson (Mr Mathison): It is really clear from your evidence and from what I hear locally that the summer scheme provision is an absolute lifeline for parents and families. It may be something that we can pick up as a Committee in respect of the Department's role and potentially work with other Departments to maximise the funding that is getting out to schools and the community and voluntary sector to deliver that provision. I sense that, locally, in my constituency, that provision is very thin on the ground. That is something that we could possibly take away.

I will finish up my questioning there. I will bring in the Deputy Chair. If other members indicate that they wish to ask a question, we will bring them in.

Mr Sheehan: Thanks to all of you for coming in today. It is clear from what you have said that the EA's SEN delivery service is not delivering for the people and the families who rely on it. Is there anything positive that you can say about that? Are there any positive aspects to what is being delivered on the ground?

Ms Harvey: Yes. What we deliver really makes an impact. We only ran schemes for five- to 11-year-olds. Then we saw those 11-year-olds having nowhere to go, so we evolved. A lot of our children have been with us since they were five years old. When they get to 18, I take them back to volunteer with us during our summer schemes. We see children who maybe needed to be taken out of the room when they were five and are now volunteering with SHINE. One child in particular carried a knife into the summer scheme when he was five years old, and he is now volunteering with SHINE. He is an amazing individual, and he will put it down to being part of a community the whole way through.

That is just one example. They can come back; they feel comfortable; it gives them confidence and experience. Our football team is also —.

Mr Sheehan: Is the EA funding that for your organisation?

Ms Harvey: Absolutely nothing.

Mr Sheehan: Is there anything positive that the EA special needs service is delivering on the ground? Where are the biggest gaps around what it should be delivering?

Ms Harvey: I have had no dealings with it, even though it knows that we exist. The relationship that I have with the school is in how we run our programme; it lets us use its building. That was through me. When I met the Minister, he sent me details about collaborations between community groups and schools during the summer, but, on the ground, we have had very little input from the Department of Education. Everything that we do is through what parents tell us that they need. We seek the funding, hire the staff and do all of that; we do not have any input whatsoever from anyone else.

Mr Sheehan: In terms of what is needed on the ground in the area in which you operate, it is your organisation that fills all those gaps; it is not the EA or the Department.

Ms O'Hara: When Anthony started in his special needs school, it did a two-week summer scheme in the first two weeks of July. That has been cut down to maybe four days. He got four days this year for a summer scheme. It was extremely last minute before I even knew that it was going to do one. That special needs school used to have a two-week summer scheme, but a lot of the schools are not doing one any more. Without the SHINE summer scheme, he would have had nothing. Without anything, the summers would be a nightmare. There would be meltdowns. August is terrible, not only for me but for other parents in the same boat. August is the worst month. In July, you are getting maybe a couple of weeks of a summer scheme or something happening, but, in August, there is nothing at all. The children are climbing the walls. They are not sleeping. That is just an example of the way that the special education summer schools were going. When he started school, it was two weeks or maybe 10 days, but, this summer, he got four; he got Tuesday to Friday this year.

Mr Sheehan: So, that has all been cut back.

What are the biggest changes in the planning and delivery of special educational needs services that you would like to see or which, you think, are needed for the families in the area that you are operating in?

Ms Harvey: There just has to be more of a linkage. The Department has to speak to people on the ground. It has to come out to see what is happening and to provide resources. We cannot do it all ourselves. We take probably 140 children over four weeks —

Ms Park: It gets more every year.

Ms Harvey: — and we could take five times that. Children are being left out. There has to be involvement from the Department of Education.

Mr Sheehan: I know that you said that the Minister has been out, which, obviously, is welcome, but how often do you get visits from either departmental officials or EA officials?

Ms Harvey: Never.

Mr Sheehan: Never?

Ms Harvey: No.

Mr Sheehan: Despite the fact that you are providing a service on the ground.

Ms Harvey: Yes. We use a school to provide that service, but that is through our own contacts. We have had absolutely nothing, to be honest.

Mr Sheehan: OK. Thank you.

Mr Brooks: Thanks for coming in today. Thank you for the work that you do. I also thank organisations like yours for the work that they do. We all have ones in our constituency. I think of Helping Hands Autism Support Group near Ballybeen, which does a lot of work that sounds very similar to what you do. It is invaluable. Such organisations do an awful lot of heavy lifting for services that are not there but should be. Thank you for that.

We are all aware of the budgetary constraints. There will be ideas about things that we all want to see changed but which we know are not going to happen overnight. Given the limited budget, what would be your priorities? Would they include investing in voluntary sector groups, such as your own, or are there other interventions? What are the two or three top things that need to be the priorities in addressing the needs of our SEN children?

Ms Harvey: From SHINE's point of view, if we had the budget, we would love to have a summer scheme for the eight weeks of the summer. There also definitely needs to be early intervention in school for those who are awaiting a diagnosis or a statement. If the proposal is to put support in place right away, it needs to be put in place right away — that has to happen — rather than make people wait, because that is detrimental to the children, especially if they are in the wrong setting in the first place. We have a seven-year-old who is a school refuser because he has been placed in the wrong setting. That has to be addressed immediately.

Mr Brooks: There is recognition across the piece, including by the Minister, that the location of specialist provision is not where it needs to be, and that is what we are working towards. We will, hopefully, see cross-Executive working to deliver that.

The other thing that you touched on is there being a move to make sure that we do not rely on the statementing process, which has become problematic, but make sure that supports are there from the off, so that, if people need them, they get them without first having to get the statement or the diagnosis.

I do not want to get into a political debate about one-to-one provision. There are differences of opinion even among parents of autistic children as to whether one-to-one provision should be seen as the gold standard and something to aspire to and chase, and it is understood that there are children who will always need that. Given that we have seen an exponential rise in autism in particular, there has been a worry about how sustainable one-to-one provision will be in future, if there are significant numbers of teaching assistants in a single class, for example. Some of that will be dealt with by having more special schools, and that is absolutely right.

Do you think that other key interventions could be put in place that would reduce the need for one-to-one provision for some of the children who currently receive it or are likely to aspire to that in future? Are you aware of other key interventions or models?

Ms Harvey: The only thing that I see is that one-to-one works. I know that there can be overload in some classrooms, which is where, in a mainstream school, a unit is probably a good idea because that is one-to-four. If only the children who are supposed to be in the unit are there, that works, but the fact that specialist provision is not available means that there are many children in units who should not be there. If it is about speech and communication, it can work — but one-to-one works.

Early intervention means providing services before children start school, such as programmes for nought- to two-year-olds. There has to be something for them before they reach primary school, because that is where all the pressure falls, and they do not have the resources. If something was done about early intervention and about waiting lists so that you could see a GP and get a referral made and something put in place, that would help. A range of services should be in place for children aged between nought and two, before they get to primary school.

Mr Brooks: Thank you very much for that. There is recognition among all parties and the Minister that we are not where we want to be on the availability of places and that there are people in placements that are not optimal for them. We need to change that, and work is being done to do that. Thank you for your insight; I appreciate that.

Mr Baker: Thank you for everything that you do. I checked my socials, and it was in October 2022 that I visited you. That was at the back end of COVID, and there were an awful lot of parents in the room that night who were beat-up, basically — upset and at the end of their tether — because there was no support for them throughout COVID. Has there been any support or respite that has helped them since then? Have you seen any increase in support, or is it just the same — a closed door?

Ms Harvey: Honestly, it has got worse than it was prior to COVID. In a lot of places where we go, people blame COVID, but it is a case of, "I am sorry. Everybody is back at work, so get on with it". Parents cannot even see a GP. One parent told us that the GP said, "He is too young to be referred". That is what parents are told. They are told, "Let him get to an age at which he has already struggled before we refer him". That is not right. The whole range of services needs to change if it is to make a difference on the ground. We are making a difference, but you could make a bigger difference by getting in earlier; that is as plain as day.

Mr Baker: Yes. It falls under the category of failure to plan. To pick up on what David said, I would argue that there has not been the massive rise that he mentioned; it is because we have failed to plan. SHINE has been there for 15 years, but you can go back further to the fights that every parent has had to make. It is a fight all the way through. You gave examples of what the parents whom you encounter are fighting for, whether that be a school placement, a diagnosis or a statement. It is constant. I have yet to come across anyone who has gone through a simple process when they have presented the needs of their child.

Ms Harvey: It does not happen.

Mr Baker: It does not happen at all, and you are saying that it has got worse. The Assembly has been back up for two years, with a Minister in place, and nothing has improved.

Ms Harvey: I agree, and every trust's process is different. A parent will come to our parents' group and say, "This is what happened: I was referred to this and to this", and another parent will say, "Well, I got a leaflet for a donkey sanctuary". Why is it not rolled out the same way throughout all the trusts? It is not.

Mr Baker: We ask that a lot in the Committee: where is Health in this? You are saying that there are different approaches even between trusts. You do not feel that there is any joined-up approach between Education and Health, never mind whether the health trusts are talking to each other to work out the best approach. I deal with SEN Space, too, and a lot of its children fall between two trusts. It faces challenges. It cannot even offer the help that it wants to, because of the bureaucracy.

Ms Harvey: Absolutely.

Ms O'Hara: Parents come to our groups and tell us that a social worker or GP told them about SHINE. They come to SHINE.

Mr Baker: They are —.

Ms Harvey: They are passing the buck.

Mr Baker: They are passing the buck, yet not a single penny goes to you. You fund yourselves or are funded through charity. You run the youth club, and not a penny comes to you from the EA. Did I pick that up right?

Ms Harvey: Yes. We thought that the visit would change that, but it did not. Nothing has changed.

Mr Baker: I do not even know where to go from there; that is the frustrating thing. I am so glad that you have come in to kick off our inquiry, because this is what we need to hear. It is not what officials tell us. We hear, on the ground, that the plans that they have made and put in place for many things, such as the approach with special educational needs coordinators (SENCOs) or whatever in schools, make things worse. You are dealing with the children and families who are impacted on the most. It is an absolutely shameful situation.

You said that the Minister came out to visit. What did he visit for? Was it just for a picture? What was it that they wanted to get out of that visit?

Ms Harvey: I was so disappointed. I assumed that a lot more would follow from that. I got an email from somebody to say, "Here is a link to youth funding. This is a copy of what you should give to a school so that you can use its building during the summer".

Mr Baker: What blows my mind is that the officials should listen to you about what you do and what works best, especially when we have all these strategies. I do not really trust that they would solve this, even if they had the money tomorrow morning. Listening to you today confirms to me that you are not being listened to. Nobody comes to visit or understands the needs of your children.

Ms Harvey: It feels as though people are listening, but then it does not translate into anything afterwards.

Ms O'Hara: Nothing transpires from it.

Mr Baker: Thank you. Keep up your good work.

Ms Harvey: Thank you.

Mr Middleton: Thank you for taking the time to present to the Committee. A lot of those issues are certainly familiar to me from my constituency work. It opens up a wider conversation. There is frustration among those in the community and voluntary sector around how they are valued, treated and respected. Your role is clearly very important.

You admit, in your briefing, that you can reach only "a small proportion of children", because you are limited in scope. In your written submission, you say:

I want to tease out a bit more about the impact on the mental health of those young people and children who come to you. You also say that this can "easily" be resolved:

What additional support could you provide if you had your own premises and extra funding to address some of those challenges?

Ms Harvey: We could do so much more if we had our own premises or even a member of staff. We are all volunteers, and we all have our own jobs, so time constraints are obviously involved. Applying for funding and doing funding returns and charity returns is non-stop. I do all that, which is fine, but it blows my mind to think about where I would get the time to apply for more funding or to get another building. Initially, we would need at least a part-time member of staff who could apply for the funding. I know that there is funding out there. We cover areas such as disability and children, and there is a lot of funding out there for those, but it is about finding the time to apply for it and getting the support to do it. We are working on the ground, but I am not an expert in any of this. I am picking it up as I go along. I do not know all the funding that is available, so it would be lovely to have that kind of support, even just so that we could run more activities.

We spoke to Danny about our mission years ago, and we talked about going out to schools, because our children suffer in school with the mental health end of things. They suffer in school because of other children. It is not that our children do not know what autism is — they do, because they live with it every day of the week — but other children do not understand. Therefore, it would be lovely to go into schools and say, "Listen, when you call his name and he is not answering, this is why". We need to teach the simplest, most basic things to other children from a young age, such as why a particular child reacts in a certain way, because they are not taught that.

Mr Middleton: Thanks for that. From my perspective, you are the experts whom we want to hear from. You are the parents, and you have direct involvement, so we very much value that.

I want to ask about the postcode lottery. My constituency is in the Western Health and Social Care Trust area, and I know of various services and groups that provide support. Obviously, that provision is different across the board. Do you know of any organisations or community groups that work well in other trust areas? There is clearly a problem in your specific trust area, but are you aware of any other groups, or have you worked with or collaborated with any?

Ms Harvey: There is a group called Sólás, which is in the same trust area as SHINE but in south Belfast. It is completely what SHINE would love to be and what west Belfast needs. It is in south Belfast and covers a large area, but the majority of our parents who come in have never heard of it. A lot of people in our SEN community stay in their own community to look for services. We have referred people to that group, but they cannot make the meetings because they happen at the wrong time or the parents have no transport. We need to have something like it in every area. It provides parental support, volunteer training, parental training, which is just everything that we need for our young people from an early age.

Mr Middleton: Thanks for that. I have a final question. You obviously support one another as parents as well, which is vital. I appreciate that you work on a voluntary basis, which is not acceptable, but do you advocate to the likes of the Education Authority and the health service on behalf of parents and young people? For example, if someone is having difficulty getting a statement or an assessment, do you do that for them as well?

Ms Harvey: As individuals we do not, but we help one another as a group of parents. We run a biweekly parent group. Every parent who is on that group has been from one end of the diagnosis and statementing programme to the other, so the advice that we get comes from other parents. What happens today is different from what happened to me 15 years ago. Parents come in, and we feed off one another. We will give support when we can.

Ms O'Hara: At the meetings, all our parents give advice. If they have been through similar things and a new parent comes in that week, they will advise them and say, "Do this", "Go here" or "Contact this person. She helped me". Whether it be on diagnosis, statementing in schools or which schools would be best for their child, parents get a lot of advice from other parents. They would not get that if it were not for our fortnightly meetings.

Mrs Guy: Thanks, folks, and thank you for the job that you do. From what you described, you are completely committed to this, and your lived experience really comes through. A lot of your evidence has really underscored the linkages and the overlap between Education and Health in helping these kids. At the end of the day, they are the same kids. We draw our lines between Education and Health, and funding lines will be drawn because that is administrative, but, at the end of the day, they are the same kids and they all just need the support that they need.

Suzanne, I think that it was you who said, "When I found SHINE". How do parents find you? How do they find SHINE? What are the different pathways? Is there any kind of simple communication? I always feel that maybe there is no such communication to allow parents to find the help that they need or to find you or whoever else provides a service that their child needs. What is your sense of the communication that parents can access to help them navigate the system not only generally but to find resources such as yours to help them?

Ms Harvey: The majority of parents hear by word of mouth, and, to be honest with you, we are nearly afraid to advertise, because we are just inundated. We have 1,400 people in our Facebook group.

Ms O'Hara: It is constant. Every day, there are five or 10 people waiting to be added to the Facebook group.

Ms Harvey: That is why GPs, social workers and schools are referring people to SHINE.

Mrs Guy: You cannot cope with the demand because they cannot cope with the demand.

Ms Harvey: We cannot.

Mrs Guy: Is anybody tracking that demand to try to make a case saying that, in a certain location, for example, there is clearly a massive demand for the type of support that you are offering? That could join the dots between Education and Health. A wee bit of me thinks that you are maybe more on the Health side of things. Is it more that you provide respite? Where does Education overlap with that? I am asking that genuinely to understand which areas should best be supported. Obviously, you are providing a summer scheme outside the school setting, and special educational needs is obviously a big interest for the Education Committee. You talk about the trusts a lot, so is it more Health that you interact with in what you are doing?

Ms Harvey: No, I went down that road thinking about our older group, because I know that they will be leaving us soon and that there has to be something for them at the other end. Certainly, with the younger children, it is definitely about education. It is 100% education that they struggle with. The reason why they have come to SHINE is because of frustration with the system. The parents are reaching out wherever they can. We deal with children pre-diagnosis as well. That is a huge thing. We do not turn anybody away. We advertise to the social workers that we deal with children pre-diagnosis. A lot of services are not available until children have a diagnosis, but they still need the support. There are school refusers at seven years old, and that happens because they do not have the support, so it is definitely about education for our younger children.

Mrs Guy: Are you interacting at all with the new set-up through the local impact teams? Are they a point of contact for you for referrals or support for the parents that come to you? Do you get that feeling?

Ms Harvey: No, basically. We kind of run in our own wee bubble and then reach out when we need support to look for funding and stuff. We have just got used to doing everything on our own. We do not know of anybody else who could come in and help us, even with our committees. It would be so good to have that and someone to advise on what we could be doing with limited resources; we are just parents who started this programme.

Mrs Guy: We can tell how invested you are.

Ms Harvey: I know.

Mrs Guy: You talked about the fact that you are funding the programme yourselves and that you are seeking funding opportunities. Is there any scope for parents to pay for the services? Is it all free at the point of use for parents, or do any of them get direct payments that could help support the services that you provide?

Ms Harvey: There are three children in our summer scheme who direct payments come for, but that is because they need one-to-one support. The biggest thing that we found last year was that 35 children applied who needed one-to-one support. They were non-verbal and had toileting issues, and we needed to open two units. That was the first time that ever happened. We could usually put 15 children in one room.

We had four rooms this year because we just could not turn them away. If that continues year-on-year and even next year, what we have at the minute will not be suitable. We can put only eight in a room because of their needs, and we needed four members of staff. We already need 1:2 or 1:3 maximum in the bigger rooms.

Mrs Guy: I could talk to you all day. Thanks very much for your evidence and for all that you do.

The Chairperson (Mr Mathison): I will pick up on the parents' experience and the need that Gary picked up on about their advocacy struggle. Two things that are on the Department's SEN reform agenda as early actions are setting up a lived experience forum so that parents can feed in their lived experience to the Department and an enhanced parental advocacy service. Has any of that crossed your path at all?

Ms Harvey: Never.

The Chairperson (Mr Mathison): We might want to pick that up, even in correspondence, because it would be good to know where those two things —.

Ms Harvey: We are crying out to be involved.

The Chairperson (Mr Mathison): When I saw the SEN delivery plan, those two things stuck out for me because I felt that parents would benefit from them, even if they had the opportunity to share their experiences so that those could be fed into the transformation work. An advocacy service for parents who felt that they were trapped in the system and were not getting anywhere would also be really welcome. I would like to see that. It would be good to get an update from the Department on that, and we can take it forward.

Mr Burrows: Thanks for all the work that you do with the parent support group, the youth work and the advocacy. It is about those who are the experts by experience as well as the academics. The two are so vital, so thank you for that.

I have a couple of questions. There was a case last year when the PSNI came into contact with someone with autism, and it was a very difficult interaction. Is anything being done to try to almost desensitise children who have autism against the first time that they may come into contact with someone in authority with a uniform such as a PSNI officer? Can something be done early and pre-emptively to make that easier? I know that that is slightly left field of education, but such things can be very disruptive to a child. Can anything be done there?

Ms Harvey: It all boils down to understanding. That means understanding not only from the child with autism because they understand and live it but from other agencies. They need training. Everyone needs training. If the resources are not there and the agencies are not getting it, they have no idea how to deal with somebody with autism. I did not have an idea until I had a child with autism. I had to get the training to understand how to deal with my own child. That has to go across the board.

Mr Burrows: It is not about shifting it on to the child anyway. I am saying that officers often go into schools, so the first time that those children see a police officer — let us work on the assumption that they need training — is not in a moment of crisis, difficulty or heightened tension. Is there any value in seeing an officer earlier on in a normalised situation and safe space?

The Chairperson (Mr Mathison): Feel free to answer that. We are definitely steering into territory that is outside our inquiry.

Mr Burrows: Just while

I was saying there.

The Chairperson (Mr Mathison): It is up to you how much expertise you want to bring to that.

Ms Harvey: My answer to that is that I have no idea. [Laughter.]

I know that it has happened in schools, and I do not think that it is a bad thing. The fire brigade came out to the primary school that I worked in.

Mr Burrows: Yes, that is a fair point.

Ms Harvey: There were lots of people in uniform. Yes, it is beneficial for all children, not just children with autism.

Mr Burrows: My next question is about access to comfort animals, which can be very therapeutic. We know that they are plentiful in prisons. Do children with autism have ready access to animals that would help to soothe them in the comfort that they can provide? Is that facility or resource readily available to you?

Ms Harvey: Not that I know of, but 100% they should be in every school. I have read about dogs being in schools and of how much that helped children with autism. That is a simple resource and easy to roll out, and it should happen.

Mr Burrows: I agree with you entirely. I will follow that up personally.

Ms Harvey: Thank you.

Mr Burrows: Where we put the scarce resources that we have for therapy animals is important.

My third question is on journey times to school. When I put a question to the Department, I was told that some journey times are up to two hours and 40 minutes. What is the impact of a long journey to school on someone who has autism, whether it is in a taxi or their parents' car? Does that have a big impact on their autism and on home time, playtime and extracurricular time?

Ms Harvey: Absolutely. The way that the transport service works for our children means that some of them are getting picked up at 8.00 am, and they are not going to class until 9.30 am because that is when their TA starts. That is an hour and a half, and that child's anxiety is rising through the roof. Just being left on a bus is horrific. I asked our parents to send me through some of the experiences that they are having at the minute, and they were constantly about transport.

First of all, the transport is not there on time and is not in place before the child starts school. The child is are going into school after it has started, which fills them with anxiety anyway because they have already developed friendships. It could be a month before their transport is in place. Then they get picked up first and dropped home last, so their six- or seven-hour day turns into a nine- or 10-hour day, which is just not good enough.

Some parents have been offered a half day for their child, but they need their education. They want to be in school. That is not the issue. The issue is not —.

Mr Burrows: That is what they need.

Ms Harvey: Yes, it is the opposite. They need to be in for a full day, and they need a shorter journey to school. I do not know whether taxis are sustainable, but, at the minute, they work rather than the buses.

The Chairperson (Mr Mathison): Please make a brief final point, Jon.

Mr Burrows: The current transport system, which often requires a long journey to school, getting picked up first and dropped home last, compounds the disadvantage as opposed to trying to support it.

Ms Harvey: Absolutely; 100%.

Ms Hunter: I extend my sincere thanks to the panel. This has been one of my favourite sessions with the level of detail that you have provided and your lived experience. You can tell the raw passion that you have. The fact that you are volunteers heading up the programme in your own free time is just remarkable. You are really closing a gap where the EA should be stepping up, so, first, I thank you for the work that you are doing.

You highlighted two really important points today. I have a rural constituency, and a mother of a child with autism said that there were no summer schemes for her son in her village. She had to travel 12 miles into Derry city, and she had no access to a car. That was the first time that that has really been flagged to me. Since then, I have had parent after parent saying that there is nothing for their child locally. Driving home that point about the lack of SEN and autism-friendly summer schemes is so spot on, and it is definitely an issue right across the North.

You really highlighted to the Committee the need for autism acceptance education in our schools. That is a point that we, as a Committee, can now take back to see what we are doing in those years when young people are getting settled into the classrooms for the first time to make sure that difference is accepted and that autism is understood. I just want to record my thanks to you for highlighting those points today.

You really touched on the significant stress that parents are under, whether that is waiting for a statement or not being provided with the right respite for their child. From a mental health perspective, what are you seeing in parents? Are they really struggling with anxiety and depression? From the perspective of the Department of Education, EA and the Department of Health, what type of guidance, support or communication would you like to see with parents who have children with special educational needs? How can they step up? What more can be done to support you during different times of your children's lives?

Ms Harvey: First, on the mental health end, at our parents' support meeting, we go through about eight boxes of tissues every single week. That is the most emotional time, because parents are just at the end of their tether. They have fought and fought and have just given up. That obviously passes down through to the child as well.

There definitely needs to be a clear route for parents, and it needs to be the same for every parent, because they are being told one thing by one person and something else by another.

There has to be a clear route from pre-diagnosis right through, and there has to be a clear route in school as well. Parents need to be kept informed. If they are told that it will be eight weeks before somebody gets back to them, at least they know, but they are not being told anything. They are just left in the dark. That builds and builds to the point where, when they come to us, they are in crisis. They are absolutely in crisis.

Ms Hunter: Should we, as a Committee, liaise more with the Health Committee, for example, to ensure that GPs refer parents to local services and fantastic groups such as SHINE that are available locally? Is there more that we can do on that side of things?

Ms Harvey: There needs to be support, such as a parent support group, everywhere and in every small town. Depending on the size of the town, such groups probably do not all need to grow and grow. There definitely needs to be a referral point for every single parent. It needs to be standard practice that every GP, every health trust and every school has the exact same route for a parent to take. The process needs to be quicker than it is now and unified right across the board. That has to happen.

Ms Hunter: You are absolutely right. Sometimes, what you will see is a pick-and-mix approach among different sectors.

That is extremely helpful. Again, I note my thanks. You can tell how passionate you are about what you do. It is certainly a wake-up call for us, as elected representatives, to hear about the continued stress that you are under and the complete lack of investment and support. Thank you so much for sharing that today. It has definitely been a very interesting session that we, as a Committee, can take back and discuss.

Mrs Mason: Thanks very much for coming in today. The Downpatrick Autism Family Support Group is in my area, and it has told me the same things that you are telling us here today. Gary, it is in the South Eastern trust area, which is a different trust area again, but it faces the same issues as SHINE.

My first question is really simple, and it can be a yes or no answer. Should any organisation or agency that comes into a school be trained in how to deal an autistic child, rather than the autistic child being trained in how to deal with it?

Ms Harvey: Yes.

Mrs Mason: Thank you for clearing that up.

Linda, you mentioned early intervention three or four times. We hear about that all the time from officials, be they Health officials or Education officials. What is early intervention? When you ask officials that question, you do not really get an answer. What is early intervention, and what should it look like?

Ms Harvey: In my experience, a parent knows well before they go to a GP that their child is displaying traits of autism, ADHD or whatever. A parent knows. Everyone whom we get in pre-diagnoses their child. They all know what the route holds for them. Early intervention involves listening to parents and putting something in place until the diagnosis comes through. The waiting list should not be up to five years. That is absolutely horrific. By the time a child gets support, they are already a school refuser and have already suffered. They already hate school and that environment. Let us take it back, and let us give support to the child.

The support can come, but they need to do it a lot earlier. We know it by the time a child is six months or one year old. Regardless of whether the health professionals know, we know. Schools are picking it up among two- to four-year-olds. More and more children are being pinpointed in nursery school. That is happening, but there is still no intervention. With a five-year waiting list, you have already damaged the child, and it needs to stop.

Mrs Mason: I wish that officials could give me that answer. There has been an acknowledgement that we are not where we want to be. The Minister has said that as well. We see the Minister and the Department hang their hat on the SEN reform agenda and delivery plan. Do you have faith that the SEN reform agenda and delivery plan will solve things?

Ms Harvey: To be honest, I have not seen the delivery plan. I heard about the £1.7 billion, but that is all. I have not actually seen anything.

Mrs Mason: The fact that you have not been part of that is an issue in itself.

Ms Harvey: Yes. I have not seen the actual plan. I also know that the £1·7 billion is not there. This has been going on for 15 years, since I became involved in autism. Nothing has changed. We have been throwing figures out and asking what is going to happen. Nothing is happening. Nothing has changed. It has got worse instead of better. I have absolutely no faith.

The Chairperson (Mr Mathison): I thank all of you for your evidence and your time today. It is very clear that, although you are an organisation that does great work, you are very stretched. You are also volunteers, so your time is appreciated. It has been great to get that community and voluntary sector perspective and the parental perspective today. It has been very helpful. Thank you all again for your time.

Ms Harvey: Thank you so much for having us today. We appreciate it.