Official Report: Minutes of Evidence

The Chairperson (Mr Mathison): Joining us today are Alma White, who is from Caleb's Cause; Caleb White, who is a pupil; Karen Ryan, a parent also representing Caleb's Cause; and Emily Ryan, who is a pupil. We will let the witnesses get seated and then make a start.

I will just let you get settled in.

Ms Alma White (Caleb’s Cause): Sorry.

The Chairperson (Mr Mathison): No, you do not need to apologise at all. It is brilliant to have you all here. Everyone around the table is familiar with Caleb's Cause and your campaign, and it has been a privilege for all of us to engage with that campaign, Alma. Today, it is particularly great to have two young people here who are profoundly impacted by your campaign issues around transitions: the post-19 support that does or does not exist and the lack of legislative underpinning. However, no doubt, you will set all of that out. I am also looking forward to hearing from Caleb and Emily today.

You are very welcome. I do not plan on any more preamble, so I will hand over to you for any initial remarks or presentation that you want to make. We will then move into questions and answers. Over to you.

Ms A White: We are very excited to be here today. We think that the stars of the show, Caleb and Emily, will definitely outshine us. Caleb will speak first, and Karen will make a statement after that, so, hopefully, we will get through this OK, and I will not cry.

OK, Caleb? In a big voice, speak into the microphone.

Mr Caleb White (Caleb’s Cause): This is my poem:

The Chairperson (Mr Mathison): Thank you, Caleb. It is not easy for anybody to come to a Committee and speak to a room full of people, so very well done, Caleb. We really value hearing your voice today. Thank you.

Karen, if you are going to speak next, I am happy to hand over to you.

Ms Karen Ryan (Caleb’s Cause): It is astounding, is it not?

The Chairperson (Mr Mathison): It really is.

Ms K Ryan: Both Caleb and Emily are predominantly non-verbal, so Caleb's being able to read that poem blows me away. Emily could sing every word of 'A Million Dreams' before she could say, "Hello, Mum". You probably saw us laying out statements on the desk during Caleb's poem. I will come back to those details as I speak.

For those of you who do not know me, my name is Karen, and I speak on behalf of Emily, who is 17 years old. She has two years left in education at Parkview Special School in Lisburn. For the past 10 years, I have been on its fundraising committee, the Friends of Parkview Committee, which supports Parkview Special School. In the past three years, I have set up my own charity called Sensability, which helps adults with a learning difficulty in our local community of Lisburn. I am passionate about advocating for anybody with a severe learning difficulty (SLD). Predominantly, the fundraising that I do with Sensability is for the adult unit at Lisburn Assessment and Resource Centre (LARC) because that is the only suitable post-19 provision for my daughter. When I went to look round it, I saw that it needed more resources and more provision, which is why I have based my fundraising efforts there.

My words are not meant as a criticism; I simply wish to highlight the improvements that can be made and can help. My words are not just stories, however, but lived experience. They are therefore strong evidence for reform. What is wrong with the current SEN school provision? The pathways from education to leaving school are not clear to families and are littered with pitfalls. From the age of three to 19, little to no explanation is forthcoming to parents on the statementing process and what that actually means for their child and, more importantly, what it will mean for that child when they transition, be that at age 16, 18 or 19. Pupils who are granted a statement of educational needs used to have the legal right to a referral for a social worker. If that statement paperwork suggested that your child has a complex disability or high care needs, or the family is under severe stress, it may trigger a formal social care assessment. Surely, however, a child who is already attending a school for children with severe learning disabilities would qualify for a social worker at that point. No: only if your child passes that social care assessment will a social worker be assigned. That is the first overlap of responsibility between Education and social care. The statement can be granted from birth, but input from Health, which is the second overlap of care and responsibility, is brought in at birth to indicate that early intervention services are secured. That happened with Emily. She has a genetic diagnosis, so, from the time of her birth, we were able to pick up a social worker, have Emily attend a Mencap nursery and then get her into Parkview Special School. At the time, I do not think that I was aware of how important that was. I just wanted my daughter to go to school from age four to age 19 and not to have to think about it again, so I am very grateful for the intervention from Health to get me into that education system.

If a statement reads that a child has a learning difficulty, it means something entirely different from that child being diagnosed with a learning disability. To give you real-life examples, Emily has a learning disability, and Caleb has a learning difficulty. Those are the two types of people whom we are trying to represent. Crucially, if a parent, specifically here in Northern Ireland, is interacting with the Education Authority (EA), the education system chooses the broad term "learning difficulty" to cover almost everything, including mild, moderate and severe learning difficulties, within moderate learning difficulty (MLD) or SLD settings. However, if the origin of the diagnosis is healthcare, that diagnosis is called a "learning disability". When that translates to school and the Education Authority in Northern Ireland, a child will then often be categorised as having a "severe learning difficulty". I know that that is confusing: are you keeping up?

What is the big deal with that? Why is there a disparity between the two? I will give you the timeline of what happens when someone leaves children's disability services and explain the impact of that. The preparation begins at the age of 14 when the children's disability team begins formal transition planning, with transition coordinators working with the parent to map out future options for adult life, such as housing and continuing education. I hope that that is accurate; I am not entirely sure of the exact role of a transitions officer, so maybe the question of whether their role includes those things could be clarified. From the age of 14, if a pupil attending an SLD or an MLD school has a medical issue, such as being tube fed, as Emily is — she is having her feed at the moment — and requires personal care, which includes all toileting needs, or if they require emergency medication for a medical condition, I believe that their parent and carer must be told at that point — when the child is 14 years of age — that their child will qualify to attend only health and social care (HSC) trust provision at post 19. You would not believe the number of parents who do not know or understand that. They have great expectations that multiple options will be available to their child post-19 and set a preference in their head for where they would like them to go. Ironically, direct payments for a child with diabetes can be made to a medical professional only outside school hours, yet staff in an SLD school are expected to manage the same needs inside school without even basic training being offered. Nursing does not oversee any medical interventions unless the pupil is fed by percutaneous endoscopic gastrostomy (PEG). That disparity between what happens in school and what happens when a child leaves school needs to be addressed.

The handover period happens at age 16 or 17. During those years, the child's disability social worker will work closely alongside an adult social worker. They will conduct a joint assessment to ensure that the child meets the criteria for adult disability services so that support does not suddenly stop. That is not working to timescale. For example, I went to a transitions meeting at my daughter's school this morning, and there was a representative there representing all of the providers.

I did meet the transitions coordinator for the South Eastern Health and Social Care Trust, Rebekah O'Neill, who gave me a leaflet. That was really useful, but there were no social workers, children's disability social workers or adult social workers at that meeting. Teachers were on-site, but the whole system falls down unless you have all those links in the chain. I said to the transitions lady, "If the catchment area of the school that a child travels to falls over the boundaries of two trust areas — the Belfast and South Eastern Trusts, for example — that disqualifies the parent from applying to post-19 opportunities across both trust borders. You must apply to a provision within the trust area in which you live". That is not automatically flagged with schools, parents, social workers or the day-care panel during any stage of the transitions process. I have heard of children reaching their last year of school and being asked why they trying to apply. Having attended Parkview Special School, they would naturally transition to the adult unit at LARC, but they are told. "You will not qualify. You live in Carryduff. Your nearest unit is Mount Oriel". They did not know that until the last year of school. That needs to be flagged a lot earlier with parents and providers.

In Northern Ireland, once a young person turns 16, they are legally presumed to have full capacity to make their own decisions. To determine whether a 16-year-old has capacity for a specific decision, a professional, such as a doctor, social worker or teacher, must apply a four-stage functional test. I strongly believe that, at that stage, those without mental capacity, such as my daughter, should have a care plan. I had a chat with somebody from the school to ask what the process was about — I declared that Emily, who had just turned 16 at the time, did not have capacity — and the school was unaware of any of the protocols surrounding that. Again, that needs to be clarified.

The official switch is at age 18. On your child's 18th birthday, the children's disability social worker will officially close their case. From that point on, all assessments, respite allocations and care packages are managed by adult social care. What parents are not told is that they will have no access to an adult social worker until their child's eighteenth birthday. There is little to no communication between the child and adult social worker teams. That needs to change. The children are still in a school setting, and that is affecting them. You may say that it is a matter for Health, if it is going to affect transitions, but I do not believe that it is. I currently cannot get to talk to an adult social worker. There is one. Emily is 17 and a half. She will be 18 in February. The earliest that I will get to speak to an adult social worker is in September at her looked-after child (LAC) review, which happens with just a few months to go. I do not think that that is sufficient.

For an adult with a statement that reads "learning difficulty" to access day opportunities after turning 18, they need to prove that they have a learning difficulty. That astounds me. It requires IQ testing by a clinical psychologist. Currently, that can take six to nine months and give an unbalanced outcome by not taking any other factors of their past development and educational history into account. A proper assessment requires a comparison of multiple factors rather than a single metric result such as an IQ test.

I will now read you a case study that was sent in from a parent who could not attend today. This highlights the example of a child who has gone to a mainstream school and then fallen off the cliff edge of care:

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That is why I believe that attending an SLD school should mean something. Indeed, if you go to any special needs school, it should mean something. No two children at an SLD school are the same. By trying to narrow down their diagnosis as a child with either a medical disability or a behavioural difficulty, you miss the point that they will both, equally, need a great deal of one-to-one input from services as an adult.

Are you going to sing over the top of us, Emily? She is going to sing us all to sleep. [Laughter.]

The next bit is on transitioning issues. Provider days are great. As I said, I went to one this morning where information was given to parents, but, really, it is the teachers — the educators — who know the young people and their needs best and really relate to them.

Greater training in the transition process is needed for senior staff members in schools. The majority have little understanding of what is involved. I ask you to consider training post-primary staff on how to write transition plans; the post-19 process; and the post-19 providers. The process currently relies on parents telling the school their preference for a post-19 place and the school then telling the health and social care day-care panel in that trust area. It is like a game of Chinese whispers.

That is not how the process is supposed to work. Education is not meant to have any involvement in the process, yet, with the lack of social workers, it has been drawn in, probably by the fear of teaching a child from the age of four to 19 and then seeing them being released into the big outside world. Teachers are taking on an extra workload to complete transition plans, which is not how it is supposed to be. That is where the gap of the social worker comes in and the process collapses.

Education can currently give the predicted placements required for the next five years with a good bit of accuracy. It may get the odd placement wrong, but it is easy to predict: when you look at five years' worth of pupils, you can see what the position is and what placements it will need. Is there a data-collection facility to support that planning? Does the EA have that information currently, and can it be published? I would love those questions to be answered.

Again, an SLD school should mean something. There should be provision mapping for them as adults as soon as they are known to school — at three or four years of age. It is not that difficult to predict an outcome when their life outcome, like Emily's, will not change or improve. Her health picture now is pretty much the same as it was at the age of four; it has not changed now that she is 17.

The tick box to say that transitioning is complete is made by the social worker, as they complete the form with all the details on it. When it goes to the transitioning panel, the people on that panel are the ones who recommend what is suitable for that young person. Teaching staff do not do an awful lot in that regard. They are passing on what parents feel is suitable for their young person. Teaching staff advise parents to look around at facilities and visit them, but they are not involved in the process.

Schools have brought forward annual reviews from May to February from the age of 16. At the annual review, that falls in the school year of their eighteenth birthday, which will be next year for Emily, families sit with the panel, social worker and teaching staff. This is where it becomes a bit like — sorry to be crude — 'Love Island' or 'Snog Marry Avoid'. You go in thinking that you have three choices, but you have only "avoid". My only choice for Emily's placement is one that I would not want her to go to, so I do not have three choices; I have one. At the panel meeting, I am likely to be told, "That's your one choice", and then, "Well, that is subject to availability". Some parents are shocked to be told that they have one and only one option because their child's needs are so severe. In February, with four months to go until their child is to leave school in June, parents should not be told that.

Fifteen per cent of pupils known to Parkview Special School have a sibling at the school. A real-life example of that situation is provided by twins Grace and Mia, who were in Emily's class and left school last June. I spoke to their dad yesterday to ask how many days a week they get. As well as the twins, he has a younger son at Parkview: three children in an SLD school. He said that they got three days — they had been told that it would be five — and that they did not get transport. I asked him how he was coping, and he said, "It's difficult. They expect to go to school. They still ask about school". Nine months on, they are still very much attuned to the routine and the stimulation that they got from school.

Greater opportunities have opened up to those who are more able-bodied, but those with a severe learning disability are pigeonholed into one placement that is subject to the availability of staffing, transport and places. Those who transition then have significant disruption to their daily routine. The creation of a dedicated transition teacher role in each SEN school would alleviate a lot of the pressure that teaching staff feel. Why should SEN schools not have that? We have careers advisers in secondary schools, so why do we not have the professional role of transition officer in special educational needs settings?

I come to the last chunk of what I want to say, which is about the value of holistic teaching in SEN schools.

Miss Emily Ryan (Caleb’s Cause): Cheese.

Ms K Ryan: Are you going to have your photo taken again?

As a person who has spent the past 10 years fundraising for the investment of well over £500,000 in Parkview Special School, I know that the money has provided the bells and whistles where the Education Authority provision stops. [Interruption.]

Emily loves to heckle me.

The Chairperson (Mr Mathison): Tough crowd. [Laughter.]

Ms K Ryan: The money has funded music therapy, a mental health counsellor and family support worker, reflexology, art therapy days, a dedicated sensory room, swings and trampolines for rebound therapy, Autism Initiatives training for staff and families, two dedicated forest school areas for outdoor stimulation, eye gaze software for non-verbal communication, insurance and training of a sensory support dog for the school, mobility bikes for use around the multi-use games area (MUGA), funded haircuts in the school salon, after-school club and opportunities for our young people to go on residential trips and to celebrate at their leavers' prom — not forgetting the provision and maintenance of a minibus, surplus to EA transport provision, to aid our wheelchair users to get out. We are sitting with a pot of fundraised money, waiting to use it on the revamp of the hydrotherapy pool. Again, that is to add the bells and whistles to the basic scheme. For almost five years, our charity has been badgering the EA into commissioning the work, because the pool often does not operate due to the age of the facility.

What is the value of holistic teaching at the core EA level of provision in a school day of the likes of my daughter's? It is about structured routine, communication time, sensory-based play, interactive story time, whole-school assemblies, physiotherapy, hydrotherapy, speech and language therapy, input from OTs and sight/hearing specialists to aid learning in the classroom environment, and daily outings and tasks for those who are able. Why would all that be put in place simply for it to stop at the age of 19? The opportunities available in Northern Ireland to neurotypical school-leavers aged 18 are second to none. The opportunities for our SEN young people are non-existent.

The Department of Health is taking on the lion's share. Health and Social Care intervenes for life. Education needs to be in place until at least 25 years old. In SEN schools, the first priority before any learning can take place is to make sure that a pupil feels safe and supported — or cared for and loved if you do not like "supported". Only after those two things are present can learning really begin. At present, post-19 Health and Social Care facilities do the most incredible job in providing those two elements for SEN adults, but they are not teachers. They provide health and they provide social care. They provide daily stimulation for the daycare users, but it is chalk and cheese compared with the structure and input seen in schools.

My charity, Sensability, fundraises for the South Eastern Trust's adult unit, LARC. We have provided the bells and whistles to make the everyday a little easier for staff. We have given staff the opportunity to take autism initiative training by offering to fund it. The day that that was suggested, it felt as if tumbleweed had blown through the meeting. Health and Social Care staff are not there to teach, but if there is no progress there is only regression. Health and Social Care needs to see inclusion from Education to offer a genuine, person-centred approach to provision. It needs to reflect a young person's needs, not just what the system happens to have available. Health and Social Care facilities are understaffed and under-resourced, so why not solve the staffing problems by adding educators to the post-19 system?

Thank you for listening.

The Chairperson (Mr Mathison): Thank you, Karen. That was a comprehensive briefing. It is invaluable to the Committee to hear that lived experience, so thank you.

I want to say at the outset that we have a big agenda, but I do not want to be calling members on time, so I am asking everybody to work with me and avoid preambles and get to the evidence that we need to hear from the parents. This is not the evidence session in which we should be clock-watching, so I am asking members to work with me so that everybody has the opportunity to speak and we get the best evidence from the parents and Emily.

This is evidence that we have not had before. I think that we heard from you before, Alma, but the detailed lived experience of what the process feels like is crucial to how the Committee takes forward any recommendations in our inquiry into SEN and in our considerations. I cannot emphasise enough how much your evidence is valued and appreciated.

I do not want to get into the legislative space at the moment because I am clear in my mind about the asks of your campaign, and I am persuaded on those asks. I have no doubt that a recommendation on the need for legislative protections post-19 will be in our SEN inquiry report. I do not have any doubt about that.

I want you to set out clearly what the experience of transition planning was like. Clearly, it is a process that is not working; there are too many disparities depending on the diagnosis or what a statement says. What should a good transitions plan look like, and who should be involved?

Ms K Ryan: That is a very good question. Alma, would you like to answer that?

Ms A White: Yes, I will take that. I presented here a year ago. It is obvious to me that I have learned so much from [Inaudible.]

I needed to bring Karen, because I thought that the transitions area was not great. In fact, having gone through it myself yesterday, it is far worse than that. Caleb has been diagnosed. We have proved that he has a learning disability. I have had sleepless nights, yet I have managed to push through and prove that my child has a learning disability, having been in special schools with complex needs since he was three years old.

Transition-wise what needs to happen is collaboration between Departments. I cannot emphasise enough how awful the process is when you do not know what is coming next. It is almost as if you are presented with a set of doors and given a set of keys, like Alice in Wonderland. You figure out how to get through one door, and you feel great that you made it, and then there is another door, and you have to go again and again and again. It never ends. You are not told anything, and there is no communication with parents or referral pathways.

From the start of the campaign, I have said that there are no guidelines, from A to Z, about what comes next. I have just got to Caleb's eighteenth birthday and found out that he had to go through a whole new set of assessments to prove that he has a learning difficulty, even though he has been at a special school and involved with the children's learning disability team since he was four, and everything is documented. We have done everything the right way.

The process induces incredible anxiety in parents; they are stressed because they do not know what comes next. It is just horrendous. I echo what Karen said: it would not happen to grammar-school pupils. They would not be told, "Well, you have one choice, and we are not going to give you any career advice. We are not going to practise interview skills, and do not worry about the UCAS form because you are not going to be able to go". There is a complete lack of equity, and that has existed for decades. I met Paul Givan over a year ago, and he said that post-19 provision is not within his remit. I said, "That's right, but transitions are. Transitions are the first step to post-19 provision, and you cannot put the time and effort into listening to parents and giving them choices". If Education was honest about that phase, parents would be told that there is very little on the other side.

The Chairperson (Mr Mathison): It does not make sense to me that transition planning is a statutory function that the Department of Education must fulfil, but it has said, "We will do the bits around the planning, but we have no interest in what lies on the other side of it". It makes no sense that the Department must provide transition planning, whether good, bad or different, and decide who can access it. How is that engaging with the plan? Education needs to be beyond just facilitating a process and ticking a box.

Ms A White: From the top down in Northern Ireland, can we please recognise that an academic pathway is not the be-all and end-all? Can we please recognise our young people who deserve a future? Just because they do not have an academic pathway, it does not mean they do not have a right to an equitable future.

Ms K Ryan: Yes, I second that. Holistic teaching in schools underpins young people's mental health. If the therapeutic solutions stop at 19, there will be ongoing problems with adults who have behavioural issues. For young people like Emily, the world will change significantly overnight.

The Chairperson (Mr Mathison): I will not take up other members' time. I will bring in the Deputy Chair, and other members can indicate.

Mr Sheehan: Thanks, Alma, Emily and Caleb. I have just one question. Alma, you said that a lot of the Departments need to be involved. What role does Health have? What sort of engagement have you had with Health until now?

Ms A White: I will give my experience because it will be different from Karen's. As a parent, it is frustrating because I look at the transition phase and ask, "Why are Health and Education not coming together on this?". For example, Caleb turned 18, and he had his annual review. The teacher was there and a careers person was there, but there was no social worker. I did not even know that a social worker should have been there. Somehow, we have slipped through the cracks. Health needs to be involved, and it has to be a joint process because mainstream and special schools cannot be put into one box. You need to separate it out and realise that the needs of our young people are very much in the Health space.

Mr Sheehan: Sorry to cut across you. Do you have any idea why the Health Department is so detached from the process?

Ms A White: Probably the cost. It all comes down to money. I speak to parents, and we feel that our children are a price tag. We see them running around and see them not as human beings but a price tag. That is really difficult.

I do not understand that because, as the Committee knows, I have been knocking on the door of Health for many months, bringing solutions to it and saying, "I want to help you to move this forward, because I'm telling you that, if you do not get a handle on it, the cost will have tripled in three or four years". For example, there are 300 pupils leaving special schools this June. We are being told that Health cannot legislate and create a care plan for those 300. Yet, over in Economy, Caoimhe Archibald has covered a massive proportion of young people. There are hundreds, and Caoimhe Archibald has covered the bigger proportion. That is the first piece of the puzzle. Now we are on to Health to say, "Stop ignoring the needs here; this has to start somewhere". That will mean Education and Health actually talking to each other. The situation with the summer schemes was, unfortunately, an example of their not talking to each other.

Mr Sheehan: Are you aware that there is a Health and Education oversight group?

Ms A White: No.

Mr Sheehan: OK. Well, there is. It was set up in March 2024. Perhaps you should go and knock on that group's door some time and find out what it has done.

Ms A White: OK, that is good to know. Thank you. I did not know that.

Ms K Ryan: I second what Alma said: collaboration is key. Emily has been picked up by the systems. Her LAC review kicked in through respite when she was eight. It is a question of how many times the two sit in parallel. A statement dictates the social worker, whether you get direct payments and whether you get extra financial support to give a child such as Emily all that she needs. They sit side by side.

Mr Sheehan: Thanks for that. Perhaps the Committee could help you with contacting the Health and Education oversight group.

Ms K Ryan: That would be great.

The Chairperson (Mr Mathison): We have some correspondence from the Department on that, which sets out what that group discussed when it met. I can check with the Clerk and the team whether it would be appropriate to share that. That could be an appropriate place to begin.

Mr Baker: Thank you for coming in. That was a lot of information.

Ms K Ryan: There is a lot of information.

Ms A White: There is a lot more.

Mr Baker: I know that, 100%. My attention was piqued when transition officers were mentioned. How many are there?

Ms A White: Michelle Guy kindly wrote to the Minister on that. When I asked that a year ago, there were 10.

Ms K Ryan: Is that two per trust?

Ms A White: Yes, there are two per trust. Apparently there are 10. I have heard that there may be six on the ground due to sickness and maternity leave, which is fair enough. I am not sure that there are really 10: I have never come across one.

Mr Baker: In your remarks, you referenced Paul Givan's saying, "It's just not my area". That is an example of Ministers closing down avenues straight away in their own minds. You said it: one Minister has done a massive cohort, but you need the transition to happen between Health and Education. I see a massive gap in education. Why should there be a cliff edge? Why are the EA and the Department not helping with those pathways? If the pathways are not being created, they should make space within what they have. It should not end there; they should have responsibility. That needs to be looked at from the Education side. I think that there is a gap in Education legislation.

I want to ask you about the frustrations with the Health Minister. I know that this is the Education Committee, but I was deeply frustrated by the Health Minister saying that there is not enough time to do the legislation. I would like to hear your view on that, because you are at the coalface.

Ms A White: What did that feel like? Honestly, it was incredibly hurtful. People say sentences, and officials have their jobs, but it is our lives. When you say no to us, you are saying no to Caleb and Emily. It was incredibly hurtful. For me, it was a dismissal; there was just a brick wall. I was not getting anywhere. I have been coming here for two years now. It almost feels as though our children do not matter. There is no aspiration, so why bother? I just do not understand that. It needs to change. I will keep coming here and saying the same thing every year until it does.

Mr Baker: It is frustrating for us. I asked questions that day in the Chamber. I would say that everyone here would happily sit as long as we needed to in order to work through legislation. The Speaker said the same thing: if a Minister wants to bring something forward, he would not step in the way. I think that the door is still open for that work to happen, so I hope that the message goes out today that some Ministers need to do more, and that MLAs are willing to do more. We have to prioritise all children. Things cannot continue in the way that has been described today.

I agree with you: it is like a price tag. I see it in my constituency work, particularly that on direct payments. It is deeply frustrating. Given the place that I represent, I deal with people from the Belfast Health and Social Care Trust and the South Eastern Health and Social Care Trust. I see the disparity in support between two different trusts when it comes to direct payments. Some children do not get support because they cannot get a social worker. That is not fair. Once you get a disability social worker in place, the payments happen, and they get support from some of our great community and voluntary sector groups; the heavy lifting is done by them.

Ms K Ryan: That is like every conversation that I have in school with every other parent. One will say, "Well, I'm not getting direct payments. I don't have a social worker", even though they have a child, or children, in a special needs school. That should mean something. There should be a categorisation that says, "You've earned your place in a SLD school. That qualifies you for life".

Ms A White: Someone might say, "Gosh, you're in the Education Committee talking about Health stuff", but it is because of that transition. I keep pointing back to that. Two weeks ago, a parent said to me, "My son's referral for adult services went in in 2024". She rang them and asked, "Where are we?", and they said, "We're working through a list from 2021-22". She had not even reached the point of the adult services referral at which there is a barrage of testing that you have to go through to prove that you need adult services. It is starting to feel almost as if someone has decided, "Let's make it as difficult as possible so that we don't have to provide the care". That is what it feels like to many parents I speak to.

I receive email after email in my inbox from parents. We are in a crisis. Post-19 provision is in a massive crisis. I do not understand why we are not driving this. I asked the Minister of Health whether he would do a post-19 inquiry into the trusts, and he said no. All I get is, "No".

Mr Baker: I get to know the families involved in the cases that I work on. When someone comes looking for help, it is never straightforward. It could be to do with placements, a reduced timetable, or whatever. I was at a wee group a couple of months back. The children were quite young, but all the parents were already worried about what will happen when the children reach 19. They were also worried about who will look after their child when they themselves get ill or are near the end of their life. That keeps them awake every night.

Ms A White: You have no idea.

Mr Baker: Thank you for bringing the cause so far already. You really are giving people hope.

Ms A White: We will be with the Health Committee next week, and we will talk about the lifelong aspect.

Mrs Guy: Thank you, Emily, Karen and Alma, and thank you to Caleb, who was here. Thank you so much, as always. Alma, you have been here many times to give us evidence. It is very much appreciated. Karen, you have done a wonderful job today of articulating the complexity of the system. I am going to give a shout-out to Parkview on your behalf as well. You know how much I love that school. I cannot wait to see the LARC next week.

You have given us a sense of it, but I want to be really clear about the kind of support that parents get through this process. Do you feel supported through transitions, or do you feel that you are the coordinator of the process?

Ms K Ryan: You are 100% the coordinator. That comes from the statementing process. Each year, at your child's annual review, you get their school report, you talk through it with their teacher, and they ask you, "Does the statement of educational needs meet what is required for your child?". Any other parent would say, "Yes", or "I cannot tell you". I learned only this week that there is a difference between a learning difficulty and a learning disability. I wonder how many parents have "learning difficulty" listed on their child's educational statement.

Mrs Guy: I am sorry to interrupt you, but I wanted to add to what you are saying. My point in asking that was that you two are very articulate and able advocates. Many parents will not be, so how do they get through this process? I would like you to add their experience to your answer, if you can.

Ms K Ryan: I would say that no information is forthcoming. We need to make a very clear communication available to parents of children aged 14 to say, "This is what is coming at 14, 15, 16, 17 and 18". I was a visual communicator before I was a mum; I have a degree in it. We were always told, "substance over style". I know that Dee Geary has a thick file about transitions. I would love to work with somebody who would be interested in working on communications.

Mrs Guy: How valuable would it be to have a consistent, end-to-end process or checklist for parents, outlining what their expectations should be on transitions? How do you feel about the fact that that clearly does not exist right now?

Ms A White: It is shocking. This is nothing new. We have been shouting for help the whole way through. Parents are fed up saying, "Here we go again". We have to be the ones who go and fight. We talk about the fight, but it is fight after fight after fight. One of the things that I would like to see happening concerns provider days.

I went to one, and I walked around. When I got to the Cedar Foundation, I asked them whether any of the providers in the room could offer one-on-one support to anyone who needs it. It does not exist, because the trusts do not double-fund. If you need extra support, you have only one place to go, and you have to hope that there is not a waiting list to get in. Provider days are good, but I would love the school to be the hub for information. The staff are brilliant, and I do not want to put more on their plate, but instead of, or before, provider days, could we tell everyone what this means? The people at the provider days do not even know why they are going half the time.

Ms K Ryan: Do not make it optional. Make it a requirement for a parent or carer to be there.

Ms A White: You rely on the poor providers. You go up to them and you ask for help and they reply, "We cannot, because your child does not fit in this box". They are doing the best that they can; it is not their fault.

Ms K Ryan: The person from the transition service told me, "We are in place from 14, but we do not see you until the final stage". I asked, "Can I call on you if I need your help?". She said yes. That was the first time, but Emily is six months off transition.

Ms A White: We need to know what is coming up.

Mrs Guy: I have one more question, which is perhaps technical. Karen, you talked about the difference between a disability and a difficulty and the impact that that has post-19. You said that the way in which that is presented in the statement is based on whether or not a medical intervention is required in school. It is clear that Caleb may not require a medical intervention, but he clearly has a disability. Would you like to see the thresholds changed in the statement so that that is clear and is articulated early on so that the pathway is clearer for the parent at that stage?

Ms K Ryan: Absolutely. It seems to be too narrow; it needs to be broader.

Ms A White: I will give you an example of something that came to light on Caleb's statement very recently and has given me many sleepless nights. I posted to parents saying, "Does everyone realise that on their child's statement, a difficulty comes under Education and a disability comes under Health?". Rightly so, you get educational support for a difficulty, but a disability is seen as being lifelong. People were scurrying away to check their statements, saying, "Oh, no way. It says 'difficulty'".

Caleb is now 18. When he first went to special school, which was back when the education and library boards existed, there were far fewer SLD schools than MLD schools. I am not going to get them all right, but the SLD schools were Parkview, Glenveagh and Fleming Fulton — there may have been others. If you had a physical and a medical disability, you were considered "SLD". That is how this happened. I did not think anything of it. When Caleb was put into a school, he was in nappies. He was non-verbal, had behavioral issues and was very sensory. You could not get more "SLD" than Caleb White when he was three. However, because he was put into an MLD school, "MLD" was written on his statement, and I did not know until a month ago that that meant that we would have to face a barrage of questions to prove otherwise. I said, "He's already transferred to the adult learning disability team for psychiatry, he's got an anxiety disorder, blah blah blah, but you want me to prove it?". I just could not get my head around it. Thankfully, I had a stack of evidence. I am sure you can all guess that, when it comes to Caleb, I will fight tooth and nail not to put him through unnecessary stress. It was confirmed yesterday that they have agreed. However, not everyone knows about it. For young people doing those tests, they look at the adaptive functioning end, but they rely on the IQ score. If you are one or two points over, therefore, you are told, "Sorry, you're not deemed to have a learning disability. You don't have access to adult services". If that person is autistic, they go back to autism services. The staff often say, "We don't really have a statutory service for autistic adults", so what do you do? Those people are sitting at home. The cracks are there.

The Chairperson (Mr Mathison): As an aside, I think that the music that Emily has brought here today is helping to keep everybody calm, so it is a welcome addition to the Education Committee. There will undoubtedly be actions on disability versus difficulty not just in the recommendations but in the follow-up actions.

Mrs Middleton: Alma and Karen, it is lovely to meet you both today. Thank you for being here and for sharing your expert information, because you are the ones living this experience every day. I thank Emily for the singing in particular, because it was very calming, and the music is lovely. Caleb spoke really well. It means a lot. Thank you.

My first question may seem a bit cryptic, but there is a reason why I am asking it; it relates to work that I am doing elsewhere. At Emily's LAC review when she is 18, do you expect the child social worker to be there to advocate for you — I am assuming not — when you meet the adult social worker, or will it be a fresh start with you back to square one again?

Ms K Ryan: The children's disability social worker will be at the LAC review in September when Emily is still 17. That will be when I get introduced to the adult social worker. However, at the previous LAC review six months ago, I felt as though I was putting the questions to my current senior social worker, who is top tier. I asked, "What is coming next for me? Do I need to get her finances sorted? Do I need power of attorney? I'm still confused about her mental capacity. What do I need to do?". They said that they have to take it to court to get a care and protection order and that if that is not done while Emily is a child, it flips over to that adult time and there will be a cost of £275. It will cost £275 if I do not put her direct debits in her name before she is 18. There is a separate cost of £275 if I forget to put her child trust fund in her name before she is 18. I still worry, day and night, about putting a will in place, because I am a single parent who owns her own house. I have not done that yet, because I have been quoted a price of £1,200 plus VAT, and I cannot afford that.

Mrs Middleton: There are a lot a lot of hoops to jump through at every stage, and a lot of administration comes with each one.

Ms K Ryan: There is a lot information.

Ms A White: This is where Justice comes in.

Mrs Middleton: This is my final question. To your knowledge, given that a wide breadth of people involved in your campaign, is there any area of Northern Ireland where the transitions are a wee bit more person-centered or streamlined, or is it just the same across the region?

Ms A White: Everyone is doing different things.

Mrs Middleton: So it is not consistent.

Ms A White: I think that I put out a post once, and I was like, "Great. Not one parent has had the same experience as the other". Some families have come to me and said, "Oh yeah, we got a transition, and we were fortunate, because we know that a lot of people do not get that". However, there was then nothing. They go through the transition, and then they say, "We have nothing for your child. We do not know what to tell you". Waiting lists are long. It is really scary, and it goes back to what Karen said. The whole process of transition is weighted on our shoulders. The whole process around when we die, wills and all of that is on our shoulders. The area of controllership is a mess. We would have to spend thousands of pounds through the Belfast courts because our kids cannot —. You cannot have power of attorney signed over, because they do not have mental capacity to sign it over. How do you get a bank account? How do you move forward with all those things?

That is why I am such a firm believer in Departments coming together before 18. Parents do not know that a lot of these things need to be in place. I am not saying that everybody — Justice, Communities for benefits and all that — needs to come to every review that you have, but a leaflet covering every single area needs to be given to parents to say, "This is what you are facing. This is where you go. Bring this or bring that. Get the information from here", because, right now, it is just Caleb's cause. I am doing that job, and I am doing it for nothing.

Mrs Middleton: Thank you so much, and thank you for being so honest. It is great for us to hear that lived experience.

Mr Brooks: Again, thank you very much for your presentation. There was a lot of information in it. I have been to a lot of Caleb's cause events, but I feel like today there has been an extra level of information for me, as someone who does not have that lived experience. As you know, I have friends who have that lived experience, but I do not, and today's session has given me a greater understanding. I have heard some of your requests, particularly around Education. It is not just about Education; it goes across Departments. One very simple ask is the one that you mentioned most recently: mapping this out in a document that helps parents navigate it. That is not an awful lot to ask, and there seems to be so much of this. I am sure that, in complex systems that we have, there are sometimes good reasons for things that have to happen, but it seems that, quite often, you are made to jump through hoops even though you are facing enough challenges as it is. The system should be making it easier, not harder.

I am almost certain, Alma, that I asked this question at Bangor Academy, and you answered it well then, but there is an additional level of information today. We talk about choices. You compared it to careers advice and so on, and that is a very useful example to enable those of us who do not have that lived experience to understand that. We have talked before about day opportunity services, and Johnny Walker from Four G was in my office just before I came here. Some of those services do great work. I am quite familiar with them. I have talked about L'Arche and some of the work that it does. Beyond that, what do some of those options look like? I heard you ask whether, in care settings, we would have an educator present to do that.

I was going to leave this until my second question, but I have done a bit of preamble. You talked about Education being involved up to 25. I will be honest: I disagree slightly with Danny. I am a huge encourager of Departments needing to learn to work together, but it is important that we know the parameters of Departments and who is responsible for what. If Education was to get involved until a later stage, why 25? What does that look like? What does beyond that look like?

Ms K Ryan: Obviously, I do not think that it should end at 25. If you are going to put something in, it should be for that young person's life. There is a prime example of that. The pandemic is the best free case scenario that we have had to prove that, without the input of services, we regress.

Ms A White: Everybody needs to realise — I have said this before — that when Caleb leaves school at 18, he is not 18. Our young people are developmentally delayed. That word "delayed" means that they are not there with skills. They need longer to learn and get those skills into place. I have looked at the UK a lot, because you are kind of comparing and asking what the UK is doing, and there it is 25. That is why I have used that as a bridge. I was like, "How can I prove this?" You are trying to prove things the entire time.

I agree with Karen. This is why, when I laid out the manifesto recently for Health, really, because we are over in the health space, it was all lifelong. But Education needs to play a part here. It is very easy to push it off to Health. The Minister has said that other Departments need to be involved, and he is right. They do. I totally get that, but he needs to lead on it for young people leaving special school. I suppose, in order to —.

Mr Brooks: I have no problem with that. As I have said before, it is not a party political point. We do not know who will be in the Education post in less than a year's time, and they will likely be dealing with this into the future.

Ms A White: Yes.

Mr Brooks: For me, this is not about trying to, as we might at other times, play politics and defend or argue against the Minister. It is about just trying to understand. If we are talking about provision up to the age of 25, where does Education's role begin and end? It is fair enough to argue that it should be lifelong, but I am just trying to have that discussion.

Ms A White: I have tried to explain to people. When people hear me talk about education —. Caleb is never going to go to tech. He is never going to sit exams. My idea of education for him is about developing his skills. I am not saying that Paul Givan needs to make a curriculum to —.

Mr Brooks: No, of course. It is different for each child.

Ms A White: Yes. It is within the settings.

Ms K Ryan: My version of education is holistic learning. At daycare, she will not have sensory input. She will not have a structured day. She will not have sensory play or access to physiotherapy, OT or a speech and language therapist — all those things that you get in school that they need.

Mr Brooks: For you, does that look like —. Sorry, Chair. I will try to —.

The Chairperson (Mr Mathison): Finish, yes.

Mr Brooks: I just want to get a better idea myself. I know about the day opportunity services and so on. Are the other options that you are looking at essentially medical settings having an educational element that is more structured and adds structure to the day?

Ms K Ryan: Yes. Look at the gold standard of places that we both like. The National Autistic Society in Carryduff — I have been and looked round their unit. It is superb. I encourage you all to go there and look it. Aspace2 near Derry is the aspiration. That is why I said that we want those three options. I would love to send Emily to the Live Life Well-Being Centre in Lisburn. That is the gold standard of post-19 care.

Ms A White: I will just say one thing, David. There is very little choice when it comes to day opportunities, so for young people who need one-on-one care, or medical care like Emily, day opportunities are ruled out. It is only a day centre. I am hoping that Caleb will go to Live Life, because it has a higher ratio of staff, but it is really tough to find the provision that meets his needs. I have gone to every charity, and they are incredible, but I cannot ask them to take Caleb with the needs that he has. They would not be sure whether they could take him. He would never cope in one of those settings and I would not put that on them. I have said the Minister that we have models in Northern Ireland. You see the cuts to the voluntary sector. If the Government cannot fund what we need, fund the ones who can: they are right there.

Mr Brooks: Thank you very much for your answers. I had not heard of a couple of the places that you mentioned, so I will certainly look into that. Thank you very much.

Ms Hunter: Thank you, Emily, Karen, Alma and Caleb. What a powerful introduction. It will stay with me for a long time, and I have learned so much. In the interests of time, I just have one question. My constituency is very rural, and you really did a deep dive into some of the rural needs that are often overlooked. I am glad you mentioned Aspace2, because it is remarkable. I have visited it, and I was just blown away by the level of support that it can provide for parents and our young people. I am currently working on a case with a young man who is transitioning out of a special school, and he lives in a rural area. One key issue is that the day centres often do not have adequate staff with the right skills to help our children, particularly if they have a diagnosis of, for example, diabetes in addition to the learning disability or difficulty that they already have. Can you speak to that? Have you heard of any similar experiences through your campaign? How do you think that should be resolved?

Ms K Ryan: When I was at the transition meeting this morning, I spoke to the adult nursing community nurses. They said that they go into non-trust-based providers to provide nursing care on an individual basis as per the need, and I was not aware of that until this morning. I thought that that was great, but the crux is that the provider has to agree to —. The nurse could go in and do her PEG feeds. If the provider does not do her personal care, that disqualifies her from going to that provider. There was a facility from Health for community nursing care to make that provision possible, but the provider would not tick all the boxes. Does that make sense?

Ms A White: There was a young chap with diabetes who had gone to a special school. He had the mental capacity and would have been capable of going to tech, and he was told, "Yeah, sorry, because of your medical needs, you cannot. You will go to a day centre". Then, there is the impact of that on mental health and that person's potential due to regression and loss of skills — it is not equitable, is it? That is what people are being told, and that is what is happening across the board.

Ms Hunter: It is devastating. As you said, it is about access to opportunities as much as the day centres, and it is grossly unfair. I sincerely thank you both for being here and for bringing your incredible children along with you, because you have really highlighted the gaps and the failures that are so evident. Some of it could be easily fixed, and yet you have had to advocate for basic human rights for your children. Thank you very much. I wanted to tap into the rural aspect, and it is something I see in my constituency, so it is interesting to hear that it is wider and those issues still stand. I am happy to pass back to the Chair.

The Chairperson (Mr Mathison): Thank you, Cara. I will bring Jon in. Jon, your mic is on, but there seems to be an issue with the audio coming through. Do we need to check that with Broadcasting? Can you try again, Jon?

Mr Brooks: He is going to go off and come back on again. .

The Chairperson (Mr Mathison): I will bring in Cathy, and then hopefully we will reestablish the connection with Jon.

Mrs Mason: Thanks very much, guys. There was so much information there. I do not know about other people, and I was not aware of a lot of it. You were both fantastic, but Caleb and Emily stole the show with their singing and the presentation at the start. It is valuable to have your input, because you have lived through this, but I want to ask you about something slightly different. The Committee has heard that a lot of children have been placed in the wrong setting. Children with serious learning difficulties — the difference between that and disabilities — have been placed in specialist provisions, and parents are like a rabbit in the headlights, not knowing where to go or what to do. I know a parent whose child is in a school that only goes up to primary 4, so they are facing a transition and do not know where to go because they do not have a place for September. Karen, I was really struck by your mentioning that you were one of the lucky ones in that you got a golden ticket, for want of a better term, to the special school because you knew Emily's diagnosis more or less from birth. Is there a piece of work that needs to be done around the wider piece of earlier transitions and transitions for children who are in specialist provision?

Ms K Ryan: There is. I have always been struck by the fact that we do not celebrate the transition even when children finish primary school. Parents of a child with Down's syndrome might choose to send them to a mainstream primary school but then, towards the end of primary school, think, "This not the right setting for my child". We do not have school open days. It is not like that big celebration where you transition from primary to secondary. It is very much like, "God, is their space" —

Ms A White: You are scrambling.

Ms K Ryan: — and, "Will they meet the need?". That is sad.

Ms A White: One thing that really concerns me — if my understanding is lacking, please correct me. The idea at the minute that specialist provision in mainstream schools (SPiMS) are being created for school places and that young people who need to go into a special school are going to be placed in SPiMS — for some, that might work. I know that there are great SPiMS — I am not criticising it — but, as with everything in the system at the minute, my fear is about whether we are going to plan ahead. Has anybody thought that they end at 16? They do not go to 19; they go to 16. A parent came to me and said, "I have this very problem. I have a son who cannot cope. He cannot do GCSEs. We don't know where to put him. I'm trying to get him into a special school for the final three years". Guess what? She cannot. What will happen to those young people? Who will track them along the way? Some will manage and might be OK. A proportion will not; they will come to the cliff edge at 16. Are they going to get an assessment for a learning disability? Will they be transferred to the adult team? Will they be moved to a special school placement post 16? Or will they be put out into the world without any support?

Mrs Mason: That, unfortunately, is probably happening even now. We hear about children who are of P7 age being put with children who are P1, P2 and P3 age, because there is no progression for those children. It is ironic that, as Alma said in response to Cara, a young person cannot go to tech because of their medical needs — they have to go to a day centre — yet we are placing children with severe, complex medical needs in mainstream settings. Something does not add up.

You mentioned the work the work that is being done in Economy through Caoimhe Archibald. What needs to be done immediately? You have talked about so much, but what is the immediate ask?

Ms A White: It probably comes back to communication. The immediate ask would be for something that can be done and is realistic, because, when I ask for something, the answer is usually, "Meh". A very basic ask would be for some sort of guideline for parents on where to go and who to ask. Whether it is through the school or the Department of Education, provide the information to the school to pass on. At the very least, that is what needs to happen.

One thing that came up in Caoimhe's work at Economy was that postcode lottery thing and not knowing where —. Somewhere that you can type a postcode into that will tell you what providers —. In the current system, it is all left to parents. That being the case, at least give parents that information, because it is left to us to find it.

Mrs Mason: Thank you very much.

The Chairperson (Mr Mathison): That is a real issue. Some excellent providers in my constituency that I deal with often find themselves in conflict with the trusts, which say, "We are not going to refer people to you because of x, y or z, or the profile of young people is not eligible for direct payments", or whatever it is. I wonder whether that is a barrier to creating that sort of database, but we need to address those issues.

Ms A White: There is no post-19 data. I have said that from the start. We do not know who is at home.

Mr Burrows: Thank you very much for the evidence. I thought that it was really useful and very moving. Some of my questions were covered by earlier questions and answers. There is just one thing that I want to address. Do you agree that it is the right thing to do, not only for our young people who have special educational needs and disabilities but for their parents, many of whom are unable to have a career because we do not give them proper support? That has an impact on our economy and on those adults who want to do something as well as look after their children. There is actually a cost to that. It could pay for itself if we actually gave more support.

Ms A White: We did a piece of work through Economy when it did its review. I met Caoimhe and her officials many times to discuss that. It has been really good to see just how much of that information they have taken in. It is an area that I think they are definitely looking at in their work on what will be provided.

You are absolutely right: in the grand scheme of things, we have parents who, at the minute, are holding down their jobs by the skin of their teeth. What happens is, if you are fortunate enough to get a placement, you do not always get transport, so you have to take your young person as an independent. They cannot travel on their own, so you are having to leave your job and do this, that and the other. It is a massive issue. It is also an issue for me when I think about the next generation. We want to buy into the economy, be taxed, have our careers and have five-day provision so that we can do that. I think about my daughters when my husband and I are not here any more. Very recently, my daughter turned round and said, "What is the point in my having a job? I am going to have to give it up to take care of Caleb, because the reality is that there is no system, and I love my brother". My daughters will be left to try and —. You are talking not just about one generation but another generation of children who have gone through school, got their exams, gone through university and have fought to get their careers, and here we go again. It is definitely an issue that needs to be addressed.

Mr Burrows: Thank you. I just wanted to get that on the record in our SEN inquiry. Of course, I do not need to say this, but nobody is saying that the main driver for doing the right thing is monetary. However, it is important that we make decisions that help our economy flourish and that parents and siblings have the chance to explore the careers that they want. I just wanted to put that on the record. Thank you for all your advocacy for people.

Ms A White: Thank you.

The Chairperson (Mr Mathison): That brings the evidence session to an end. I think that I can speak comfortably on behalf of the Committee to say a very clear, "Thank you", as many other members have done, for your evidence today. That is for Emily, Karen, Alma and Caleb. I am also conscious that you are probably a little weary of receiving thanks for your advocacy and would like to see some action. I think that we are all conscious of that around the table, and that responsibility clearly sits with us as elected representatives.

Ms A White: Can I just end with one point? You are all going to love this. I do not know whether you remember the last time that I was here. I posed a challenge. Julie, you will not know about the challenge yet. We have got another year in this mandate. I am still waiting to see whether there has been any work experience for young people from a special school. I said that you could team up and bring a young person from a special school in here to do work experience, maybe for an hour. It may need to be adapted. I would really like to see that happen. I am watching. It has been a year. The clock is ticking. We also have a sheet of bullet points that we would like to leave with you, if that is OK, to sum up what we have talked about and give you homework to do.

Ms K Ryan: You are welcome to have it. It is an overview of what I said.

The Chairperson (Mr Mathison): Challenge heard and received.

Ms A White: You know what I am like.

The Chairperson (Mr Mathison): I will say on the record that I have not taken up that challenge as yet. That is to my shame. I think that we all need to take that seriously and put our money where our mouth is. Would it also be possible to share Caleb's script that he read from earlier, just even through the Committee Clerk, so that we can have that —

Ms A White: Yes, of course. That would be lovely. Thank you.

The Chairperson (Mr Mathison): — and it can be added to the record? That is just so that we can ensure that we get everything exactly as he wanted to communicate it. There is a whole range of actions arising from this, not just the evidence for our inquiry. We will take that forward. Thank you again.

Ms A White: Thank you for letting us come. It is not often that we, as parents, actually get to be heard. It is actually really lovely. Thank you.

The Chairperson (Mr Mathison): I usually spend Committee annoying everybody by saying, "Time, time, time" —

Ms A White: I know. Sorry.

The Chairperson (Mr Mathison): — but this evidence was really important today. I hope that you feel that you had the opportunity to put what you wanted to put on the record.

Ms K Ryan: We really do.

Ms A White: We really appreciate that.

The Chairperson (Mr Mathison): Thank you.

Ms A White: We will be back at the Health Committee next week.

The Chairperson (Mr Mathison): Good luck.