Official Report (Hansard)
Date: Wednesday, 15 May 2013
Committee for Employment and Learning
Special Educational Needs: Post 19 Lobby Group Briefing
The Chairperson: Good morning, ladies. You are very welcome to the Committee this morning. Thank you very much for seeking to come in front of us to give evidence. I welcome Mrs Julie Jamieson, a volunteer from the Post 19 Lobby Group; Mrs June McShane, a volunteer from the Post 19 Lobby Group; Mrs Ruth Walker from the Post 19 Lobby Group and vice-principal of Sperrinview Special School; and Mrs Denise Warnock, a volunteer from the Post 19 Lobby Group.
We have received your briefing papers, and I assume that all members have read them prior to your coming today. Perhaps you would like to provide some additional information in support of those, or you may want to give a reaction to the briefing that you have just heard. I am sure that members will follow up on that, too. Ladies, it is over to you.
Mrs Ruth Walker (Post 19 Lobby Group): I will kick off. Thank you very much for your kind invitation to come here today. This is the second opportunity that those of us from Dungannon have had to engage with you in the past fortnight. We received an invitation to the debate and to meet the Minister two weeks ago. We trust that you will take the lead in moving the issues forward. As is widely acknowledged, the problem definitely does not rest with just the Department for Employment and Learning (DEL); it crosses into the Department of Health, Social Services and Public Safety in particular, as well as the Department of Education and the Department for Regional Development.
I want to point out one inaccuracy in my briefing paper. We searched high and low for day care opportunities in Dungannon, and we eventually found them. My paper says that there are none. In fact, there are some, but they are limited. I wanted to correct that before going any further.
I would just like to expand a little on the transition process from the school's point of view; further education opportunities and the issues that we have; and the world of work for our young people. I will then talk about how we as a little group in Dungannon have been moving forward.
The thought of their young person leaving school evokes a range of negative emotions in our parents. The process begins after a pupil's fourteenth birthday and continues as a series of annual reviews until the year they leave school. In the minds of many parents, transition does not need to be considered until the final year of school because they believe that there will be suitable five-day opportunities post-19. I have sat in transition meetings this year at which our DEL careers officer, Southern Education and Library Board transition co-ordinator and the health trust transition officer struggled to offer any viable alternatives to a place in day care when they knew that day care was not a suitable placement.
Over the past five years, day care in our locality has been run down terribly in preparation for Transforming Your Care. At a recent My Day, My Way event run by Mencap, the Health and Social Care Board described its vision of care for people with learning disabilities. We welcome the move away from day care as it exists now, which offers very little opportunity for engagement with the community or use of local facilities. The Northern Trust has already implemented a new system in which only those with challenging behaviour or really complex needs remain in day care. The majority of those in day care now attend a hub or base: a centre from which they can access a range of community-based opportunities with appropriate support. We would very much welcome that model, although we have concerns that the health trusts will not implement it in the way that the board's vision suggests.
As a school community of parents and staff, we believe that every child has a right to an education and has the ability to learn, no matter how complex his or her needs. A young person with severe learning difficulties will certainly learn more slowly, but the case for continuing that journey beyond the age of 19 is very strong. We would like further education (FE) opportunities in every town.
South West College currently provides part-time and full-time courses at entry level. I would like to make this point after hearing you talk about continuity earlier: it is very hard to provide continuity when students can start only at the highest level. Level 2 is, I think, generally where students start at FE college; the colleges do not really want to offer anything below that. However, level 1 is still well beyond the abilities of most of our children. Entry level 3 is top end, and the only thing being offered currently is entry 3 level. So where do they go? It is not as though our children will progress from entry level 3 to level 1 in a year; it is a huge jump. So they need to be able to come in at a realistic level that leaves them somewhere to go.
At present, Dungannon campus does not have any provision below level 1. South West College proposes a one-day course at entry level in Dungannon to commence in September 2013. Funnily enough, that came about only in the past couple of weeks after we had talked an awful lot to other people. That is most welcome, but a plan to deliver that into a full-time commitment is required, especially considering the Transforming Your Care agenda, which aims to empty the day care centres of people at a higher level of ability. They have to have somewhere to go. We believe that there is a case for a specialist college for adults with learning disabilities, but that is probably a realistic option only for the cities in which the population could support it. Rural areas are different, and we advocate a model in which we would be more integrated into our community rather than separate from it.
Viability is a major concern for the colleges, and we struggle with that as an economic argument. According to the Southern Education and Library Board, the cost of keeping a young person in Sperrinview Special School for the 2012-13 school year was £16,563. The per capita cost for Oakridge, the social education centre behind us, for 2012-13 was £12,500. So there is a £4,000 deficit. If you put 10 young people in a room to be looked after by one member of staff, you have just saved £40,000. Where does that £40,000 go?
In a model in which individual needs are paramount, cost-effectiveness cannot be the bottom line. That is recognised by special education. In a briefing that the Committee received from Colleges NI on current issues in further education, there was no mention of special educational needs, apart from an acknowledgement that NEETs, whom we heard discussed earlier today, was one of the six major issues facing the FE sector.
Mr Ramsey stated:
"There is no doubt that further education makes an immense difference to young people’s lives in the areas of education and training. I particularly agree about the difference that it makes to NEETs. However, that is for another day and the Committee will need to sit down and discuss a way forward in that area and the cross-departmental approaches that are necessary to make a further impact."
That was on Wednesday 29 June 2011, and I do not think that we have made much progress since.
Special schools buy in the services of specialist job coaches to enhance the skills and experiences of their senior pupils as they prepare for the world of work. Our vision is for young people to leave special schools and take their place in society, contributing to the economy through paid employment; this they could do.
I spoke recently to a lady called Flo Longhorn, who is a specialist working with people with severe and complex difficulties. I can find no evidence for this, but she described to me the situation in Luxembourg, where she lived for a while, where there was zero unemployment and every person, regardless of their disability, had a job. She talked about a young lady with cerebral palsy, who had profound and complex needs. All that she can do is smile, which she does beautifully, so she got a job beside the receptionist in a hotel, where she smiled at people as they came in and out. It is a radical way of thinking, but it is one that we may have to embrace.
The benefits system, the fear of losing places in day care, the lack of support in the workplace and the fear that employers express about supervision and insurance have all conspired to make the world of work largely closed to people with special needs, as you have heard today.
We encouraged our parents, who have spoken with one voice, to express their grave concerns about provisions for young adults with severe learning difficulties in the Dungannon area and beyond. At a parents' meeting attended by our local MLAs, they asked questions to which there were no easy answers. The Southern Trust allowed Oakridge Social Education Centre to fall into a neglected state. Transforming Your Care was on the horizon, and no one really knew what that meant. There were no further education opportunities in our local college at a suitable level — entry level 1 to 3 — and the only social firm in our area was Appleby Printit.
A small committee of parents from Sperrinview has spent the past three months investigating models of post-19 provision for young people with severe learning difficulties (SLD) throughout the Province. There have been some very encouraging examples of local practice. The same story, however, is being heard from all over the country. After our 'UTV Live' report last week on the plight of Sperrinview school leavers, we received phone calls and messages from Fermanagh and Omagh, and particularly rural areas where the same problems and needs have been identified — the lack of further education, the reduction in day care, concern about the quality of day care, the lack of appropriate and fulfilling activities, social isolation, concerns about benefits and about holding down a job when caring for a young person at home, mental health issues and planning for the future.
The parents met on Wednesday evening to write a constitution for a new learning disability support group for our town. It will be called Accessing Support, Provision, Inclusion, Respect and Equality (ASPIRE). It will continue to raise awareness of equality issues, offer support and guidance to parents, signpost services, raise funds and organise social events.
In conclusion, I believe that the only way to ensure equal opportunities in FE and employment for individuals with learning difficulties is to develop legislation and protect them in law.
The Chairperson: Thank you very much, Ruth.
Mrs Julie Jamieson (Post 19 Lobby Group): Ruth has said everything. [Laughter.]
The Chairperson: You have said it all, Ruth. You definitely did your homework.
I know about Castle Tower School in Ballymena because I worked closely with my predecessor, Robert Coulter, who was chair of its board of governors, and he highlighted the transition issue to me.
When you heard the earlier briefing from the departmental officials, did anything give you hope or make you think that things were starting to move, or are you more concerned?
Mrs Jamieson: The fact that the Department is only now starting a mapping exercise of the available provision is shocking. This is not a new situation; it has persisted for many years. It is terrible that it has taken the momentum of parents coming together to make people sit up and take notice. It has been a long time coming, but things seem to be moving in the right direction. How quickly they will move is a different matter.
Ms McGahan: Thank you for your presentation. You are welcome. You heard the briefing by the departmental officials. Ruth and Denise, do you feel any more confident or reassured that we will make progress, particularly in the Dungannon area?
Mrs Denise Warnock (Post 19 Lobby Group): As a parent, I feel that there is a lot of talk but not a lot of action from all areas.
Ms McGahan: Denise, having spoken to you and your husband, I know that you feel that the doors are open but there is nothing behind them.
Mrs Warnock: That is what everyone says. You talk to different people —
Mrs Walker: There are lots of little chinks of light in our area, but only because we are rattling the cage, not because anyone really has the will to make anything happen. The South West College is anxious now because it knows that there is an audit on the way. It has increased provision on the Cookstown campus from part-time to full-time so that things look a bit better there. They have offered something in Dungannon to throw us a crumb, which is great, and it is a start, so we will not knock it. They need to be sure that they have people to fill the places, and I have been telling them all along that there are plenty of people to do that. There is no point in trying to say that there is nobody to fill the places when there is no course. Put a course on and then see. It will be a slow build, which will be more successful: if 20 young people wanted places at the start, the college would be swamped and would not get to know their individual needs, so they would drop out because it was not working. A slow start is good, so they should not knock the course within the first two years because only seven or eight people are taking it — it will build.
Ms McGahan: Denise, I just want to say that you are one in a million. You have been very brave in pursuing this. Ruth, well done on all your good work. Julie, I have read your report, and it is excellent. So fair play to you all.
Mrs Warnock: From a parent's point of view, none of us had to come here to sort out our other children. I have a daughter coming 22, who has been through school and university and has lots of opportunities. I have another daughter aged 16, who is having a great school experience and has a great social life. For my son, that does not seem to be the case.
The education side has been fantastic: we are very fortunate to have Sperrinview, and I cannot stress that enough. However, what happens when that ends? It provides support for my son, but it also provides support for me as a parent. It is fabulous. When I put my son on the bus in the morning, I know that he will go to school and have a great day because he is out and about, going to the local leisure centre and the technical college. The transport is there, the education is there and the social side is there. When school stops for Darren in June, all of that stops. That is very frightening because Darren has a good circle of friends at school, and all that goes when school stops. I cannot stress enough how difficult that is.
When I was listening to some of the earlier comments from the Department, I asked myself where all this was happening because it is not happening in Dungannon. I spoke to people from our technical college yesterday, and they are very concerned. Even for the one-day course that the college offers, they do not yet have anything organised. At the age of 16, my daughter can go into the tech, and, if it does not work out, she will just tell me that, for example, the teacher did not turn up. However, I need to know that my son, at the age of 19, is going into a safe environment with the proper support and that he will be able to mix with everybody and receive some education. That has to be provided under the right circumstances. We cannot just be thrown a token and told, "Here you go. See how that works." That is not going to happen because all the good work that the school has done to bring Darren on this far, helping him to become as independent as he can be, could be undone if he went into the wrong environment. That could knock his confidence, and he might never go back to the tech. So it cannot be a token offer; it has to be a proper structured course. I feel, certainly from speaking to a representative of the tech yesterday, that what it offers is not that. So we will follow that up.
I feel, from a parent's point of view, that I have had to do an awful lot of work. Transition was mentioned — transition is an absolute joke. The group that we started in Dungannon is trying to organise a meeting on 29 May to meet parents who are in the same position as me, or will be in that position next year, to let them know exactly what is available in Dungannon because nobody else will tell them. Surely there are people getting large salaries who are supposed to be telling us what is there and creating opportunities. That does not seem to happen. In 'My Day, My Way', which was published in August 2011, DEL was asked to ensure that there were proper new further education courses for people with learning disabilities and to maintain a focus on preparation for work, independent living and some leisure opportunities. That was 2011 — we are now in 2013, and those things have not happened. Another comment was that there would be more job opportunities, which has not happened either. I just feel that money is spent on talking to people and printing documents, but who does anything about it? Here we are in 2013, and we are no further forward. I reckon that, if I came back here in 2015, we would not be any further forward. If you were sitting in my seat, you would find how slowly things move very frustrating. I am very disappointed with how things are going. A lot of people are talking, but until we see some action, I will not believe that things are moving.
Mr P Ramsey: It is hard to follow the testimony of a mother who is choked with emotion. I am delighted that some of the departmental officials have stayed on to listen to this because it validates some of the points that I made to the officials when they were giving evidence. You have not actually said this, so I will ask: do you believe that post-19 children are abandoned by the state?
Mrs Walker: Yes.
Mr P Ramsey: They clearly are, which is why I made the point to the officials. Our close involvement with NEETs and careers guidance links to the next phase. The most vulnerable in our community are those with learning difficulties. Maybe we should consider an inquiry. I do not offer that as a proposal, but I think that we should consider it and look at models of best practice. The Department's representatives said that we have models of good practice now. Do you know where they are? No — silence.
Mrs Walker: There are some outside the sector, and they are not as constrained. We visited a group called Destined in Derry, which is an excellent example of how day care can be transformed into something much more dynamic, but then the health service had nothing to do with it, which is why it worked.
Mr P Ramsey: It is a community-based voluntary organisation. Mary McIvor made the point that there may be additional moneys, so that money could be redistributed, not to the colleges but to those on the ground who have the specialist knowledge and expertise to deliver the programmes for education and employment opportunities.
Only a few weeks ago, we held an event here that was attended by parents. You are a young mother now, Denise, but I have seen mothers who, as they grow older, have more demand placed on them, and they develop other difficulties. They develop mental health problems due to the pressures of caring, and their greatest fear — they gave this testimony here — is of leaving their child abandoned and institutionalised. As they said here, they would rather their child die, and those are the same circumstances.
We have to ensure that we forensically examine DEL. I am not being critical of DEL because the Departments of Health, Education and Agriculture also have a role. However, the Department of Health and DEL have the main role because they are the providers of education and employment opportunities for young people. I will not rant, but we must forensically examine what they do and where they are getting it wrong.
Jim Allister was right. The officials talk about a strategy here and a strategy there. They say that they are running a consultation, but one half does not know what the other half is doing, and that is even within one Department. Trying to bring a Department to account is absolutely maddening. Last year, officials talked to the Committee about the economically inactive, some of whom are represented by the Post 19 Lobby Group, yet the Department does not talk to groups representing disabled people. The Department is failing somewhere.
Please be assured that there are Members of the Assembly who feel strongly and passionately about those in our community who are disadvantaged and vulnerable. We will do what we can to advocate for and champion them.
Mr Douglas: Thank you very much for your presentation. Julie, you put it together, and it was excellent.
You mentioned a number of organisations, including Orchardville, which is in my area. Last year, the leader of New York City Council came to east Belfast — I think that Chris was there as well. She went to Orchardville and met parents and some of the people who worked there, and she had a smashing lunch. At a public meeting, the one thing that she highlighted was the great work that was going on. Now, there is Orchardville, and there are now other projects as well. You do not seem to have an Orchardville-type project that creates employment, gives parents a bit of respite and gives young people that sense of dignity beyond 19.
Finally, the last thing that your report says is that the time for action is upon us. Pat is saying that that is right. There is a lot of goodwill here to help you, and we want to do that. What is your advice to us? What do you want us to do now? We need to have a discussion about what we can do, but what is your view on that?
Mrs Jamieson: Ruth mentioned it in her presentation. A lot of our young people, when they are coming through — my son has no communication whatsoever. He is 11, and hopefully that will change by the time he is 19. Learning is slow, but when he gets it, he retains it, and hopefully that will happen. His option is a day centre, where there is no formal education input. Effectively, his learning stops at that point, because there is nobody there who can help him to continue on that learning curve. Through puberty, there are learning dips for the same reasons as all our children have issues. The right to have an education beyond the school experience is a very key thing, and, as people said earlier, an education does not have to be provided in an FE college. It could be provided in the day centre, but that takes integration and all the things that are very clear from the research paper. That is a key thing for us.
We looked at some SLD colleges as part of the research, and there were a few in England that we were very interested in. However, they were providing that kind of support between maybe 19 years and 25 years. That allows people to come out of that learning curve and continue to develop. Who knows, at 25 they could be ready for FE college or employment, but they need that. We are stopping them at 19, which is chronological age, but it is not an age. Mentally, their capacity could be that of a six- or seven-year-old, and nobody I know would send their six-year-old out to face the world. Do you know what I mean? It is about understanding that chronological age is immaterial for many of our young people. That right to education would be a huge step forward, and I know that there were some investigations around a private Members' Bill.
Mr Douglas: Through your research, did you find that there is a role not just for DEL but for other Departments? I am thinking of, for example, the Department of Enterprise and the social economy. Did you find that those linkages did not exist or that they could be improved?
Mrs Jamieson: We can look at all the great social enterprises and things that are there, but the sad thing about those is that people with more profound and complex disabilities maybe do not have the funding that allows them to participate. It is the vulnerability aspect of it. If 100 young people leave school each year in Northern Ireland, 20% do not have those opportunities. Their only opportunity is a day centre, and, for those young people, there are then issues with education and access to appropriate placements. Through Transforming Your Care, we hear a lot about the personalisation of care. That is welcome, but how do they make that happen with the resources that they have at the current time?
Mr Allister: You could maybe help me with a couple of things so that I can better understand some of the issues. You say that, for example, the further education colleges do not provide sufficient access at a suitable level. How far is that access with a view to ultimately getting into the workplace, or how far is it access to substitute for provision, which presently ends at 19, for those young people and to give them somewhere to go, something to do and something to feel worthwhile about? Could you explain the balance there?
Mrs Walker: It is a bit of both. At entry level 1, which is the very low level, it is about something to do and personal development, and those young people will probably never be able to access the workplace as we know it. Recently, the principal and vice-principal of Tor Bank School visited Germany, where a whole industrial estate has been set up for people with learning disabilities. Companies like IKEA and BMW have factories there. It is simple assembly tasks. If that existed here, would there be any need for the courses? Maybe not, but there is not anything else for them to do that is a worthwhile opportunity.
Mr Allister: I know that this is very difficult, but what percentage would have the capacity to ultimately move into the workplace?
Mrs Walker: If we were in Luxembourg, it would 100%. It depends on your view of the workplace.
Mr Allister: Yes, because the workplace adapts to meet the level of capacity.
Mrs Walker: Yes, and why not? One of the things that I suggested was, why, when Invest NI is handing out the big grants, it could not stipulate that each person who gets a grant must provide a place for a person with a learning disability.
Mr P Ramsey: You are quite right.
Mrs Walker: It was suggested earlier that the Department of Education relies on the same people, who have a good relationship with people with learning disabilities, to take them on again and again. We cannot keep doing that. We are going to run out of goodwill, time and people to do it. We need to see changes in our attitudes to it, like Luxembourg has had. Why can they not go in and work? We have Powerscreen and numerous factories in the Dungannon area, and not one of them employs anybody with a learning disability. When the big money is going out, it should be written into the contracts that they have to employ someone with a learning disability, at whatever level, and then come alongside and support them. It can be done, but it would require quite a shift.
Mr Allister: Is that the sort of protection you were thinking of when you said that you wanted to see protection by law, or something more than that?
Mrs Walker: It is about equality of opportunity. The Autism Act (Northern Ireland) 2011 tried to further that for people with autism, but I think that is possibly doing a disservice to people with learning disabilities in general. In America, I think that they have a certain equality status for people with learning disabilities. One of our classroom assistants in the school has just moved back from New York. Her sister is in Oakridge Social Education Centre. She said that, in America, your dog would be better protected in law than people with learning disabilities are here, and that her sister would have much more opportunity in America than she has here. I do not know whether that is true or not — I have not looked into it — but, in education, our statements of special educational need are statutory documents that state that we must provide this for this young person. That ends at 19. Why? Could it not continue?
Mr Allister: Explain to me the impact of Transforming Your Care, or the preparation for and anticipation of it. What has it done to the facilities that are being offered?
Mrs Walker: Ten years ago, they were much better. Ten years ago, Oakridge was a more vibrant place and more money was obviously going into it. The communication between Health and us, as a local education provider, was much better. As Health reformed care, the management moved up and away; the management for that facility is now remote, and there is no vision in the leadership. They definitely could do with the funding being put back in. They are moving towards Transforming Your Care. No one told us about it before; we are only finding out about it this year, yet it has obviously been planned for some time.
Mr Allister: How is it going to impact?
Mrs Walker: There will be fewer places in daycare. It will be for people who have the most severe and complex needs and challenging behaviour. At the moment, I know that those who are of a better ability have been told that they are leaving daycare. I would say that that is the same in your area.
Mr Allister: Can you understand the rationale for fewer places in daycare?
Mrs Walker: I hope that it is for better-quality provision for those who need it.
Mr Allister: Do you think that it is?
Mrs Walker: I hope that it is.
Mr Allister: And for those who do not get it?
Mrs Walker: I am very concerned.
Mrs Jamieson: I think the worry is for those people. We have a number for whom Drumross would be our local day centre. Eight of their clients, who have been there for 30 or 35 years, have been told that they are leaving this year.
Mr Allister: Where are they going?
Mrs Jamieson: They have been told that they are perhaps going to The Base, which is a kind of drop-in centre —
Mrs Walker: One day per week.
Mrs Jamieson: A supported drop-in centre for older people. However, that will not be for five days a week. The difficulty is that they were probably initially based in Drumross inappropriately, because they maybe did not have the needs that warranted the day centre setting. However, because there was nothing else, that is where they had to go. Now it seems that they are making way for the young people who are leaving school with profound and complex disabilities, and the older people at the other end of the spectrum are being tossed out and told that they have had their time. Why are services not available for all those people, irrespective of what age they are? It is not a good mix to have older people and younger people together, and age-appropriateness is an issue. However, to be providing services for one group at the expense of another just does not seem — and that is around Transforming Your Care.
Mrs Walker: As you can see from the elderly population and the way things have gone for them, people who are going to be least well served by Transforming Your Care are those who are in care right now. For us, looking forward, it probably will not be a bad thing; it will be what you get used to and what is there. However, for those who are in it at the minute, there is the potential for learning disabilities to be —
Mr Allister: At least in the residential care sector there is the private sector alternative. You do not have that.
Mrs Jamieson: No.
Mr Allister: So it is what you have, or nothing.
Mrs Jamieson: Yes.
Mrs Walker: We hope that they have learned from what happened with the elderly population and that they will not rush in and make the same mistakes.
Mr Allister: I would not count on it.
The Chairperson: Ladies, thank you very much for coming along and giving us your presentation and your time. I think that it will be very worthwhile for us to forward the Hansard report of this session to the Department for comment, just to see what it comes back with on your comments.
Again, thank you very much for your time. If there is anything else that you want to forward to us, please feel free to do so. Please keep in contact.