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Northern Ireland Assembly




Independent Review of Autism Services

 3 July 2008 

Members present for all or part of the proceedings:
Mrs Iris Robinson (Chairperson)
Mr Thomas Buchanan
Mr Alex Easton
Mrs Carmel Hanna
Mr John McCallister
Ms Sue Ramsey

Dr Stephen Bergin )
Dr Sandi Hutton ) Independent Review of Autism Services
Lord Maginnis )
Mr Michael Swann )

The Chairperson (Mrs I Robinson):
The next item on the agenda is a briefing by the Independent Review of Autism Services in Northern Ireland. A copy of the review’s report is included in members’ packs. Autism Northern Ireland (PAPA) has also submitted its views on the review’s report.

I welcome Lord Maginnis of Drumglass, chairman of the Independent Review of Autism Services, and Dr Stephen Bergin and Dr Sandi Hutton, members of the Independent Review of Autism Services. I will invite you to make a brief presentation — approximately 10 minutes — before opening the session to questions from Committee members. You are very welcome today, and we look forward to hearing what you have to say on such an important subject.

Lord Maginnis (Independent Review of Autism Services):
Thank you, Chair. We have looked forward to this day for six or seven months, and we thank the Committee for inviting us along. If you will excuse me, I will put my phone on to silent; I am sorry about that.

Ladies and gentlemen, as you know, the Minister of Health, Social Services and Public Safety, Michael McGimpsey, announced an independent review of autism services in 2007. We were given a mandate to advise on a properly structured plan on how best to improve the provision and delivery of autism services for those on the spectrum and for their families.

I am accompanied today by Dr Sandi Hutton and Dr Stephen Bergin. When I was first asked to chair the review, there were three other members of the team: Professor Michael Fitzgerald, a psychiatrist from Dublin; Professor Rita Jordan, an educationalist from the University of Birmingham who is well known in the fields of education and specifically in autism; and last, but certainly not least, Heather Crawford, who is a specialist in speech therapy. Towards the latter end of the review, we felt the need to have someone who was well versed in adolescent and adult psychiatry, so Dr Joan McGuinness joined us at that point.

We researched and consulted widely. At our first meeting, I made it clear that we were not going to reinvent the wheel. Since 1943, when autism was first defined by Leo Kanner, a world of material has been produced on methodology. Some of it is questionable, some of it is sound, and some of it requires further development; it is a process that is always moving on. We did not feel that it was our task to deal with that — that is for the consultants and the people who deliver autism services.

I do not wish to be disrespectful of those in the health services who are exceedingly keen to help and co-operate with us. I do not want to pick out people. I could pick out health visitors — people such as Angela McLernon — but I will not do so. There are people such as that who are totally dedicated and who gave us their full co-operation. We can have no complaint about that. However, we found that there was a lack of cohesion and continuity in the delivery of services. For example, there were differences between different health and social services boards — there were all sorts of disadvantages. One of the main disadvantages was that no tangible evidence was being kept. There were no records — nothing that could travel on with the person who was on the autistic spectrum. That was a matter of concern to us.

We had some difficulty in that respect. We had hoped to complete our study in about three months, but because it was so difficult to collect information from the statutory authorities, we took six months. Taking that extra time was worthwhile, however, and as a result, we have produced a fairly well-balanced report. You would expect nothing otherwise, but we are reasonably content with what we have produced.

I mentioned methodologies. I will also mention, at this initial stage, those in the voluntary and community sector organisations that have worked with autism down the years. Some of those organisations have been around for 15 or 20 years, making good recommendations, some — but not all — have established groups, some have organised help for those people on the spectrum and their families, and they have interacted with schools and other professionals as far as possible. They have done a marvellous job with very few resources.

My team hopes that it will not be discounted to any degree when a more cohesive statutory approach is taken to the delivery of autism services. We believe that we have a role to play. People who have a foot on the ground, including grandparents, siblings and some professionals, organise get-togethers and mutually supportive meetings of parents and carers and who have recognised the need to support and educate and create awareness, have a huge job to continue to do side by side with the statutory sector.

I hope that I have provided a general picture of what the review attempted to do, but, in the short time that is available, I will make a couple of points. The nub of our message is that there is a lack of awareness of autism right across the community. That includes a lack of awareness among professionals; my professional colleagues would be the first to admit that. Some GPs and teachers — and I will return to that profession — say that autism does not exist and that there have always been people who were slow learners.

Success will require much greater awareness and will depend on an obligation from people who have a role to play, including GPs, health visitors and schoolteachers. Those professions must be aware of autism and accept that it is a condition: that fact cannot be dismissed. That will become hugely important as we proceed. There are — and always will be — sceptics, but they must not get within a hound’s gowl of the people across the spectrum who need the service, their families and their supporters.

I will conclude my introduction by saying that the one constraint on our inquiry was that we did not have authority — or any great welcome in some areas — when we tried to step outside the parameters that were dictated by the Department of Health, Social Services and Public Safety. I am the first to admit that that has placed a limitation on our report. I wish that we were not limited in such a way, but there appears to be no desire for other Departments to co-operate; people seem determined to work in silos and to claim that certain areas are their sole responsibility. Unless that can be overcome, difficulties will emerge in the future.

Ideas that are taken off the wall and that have not been researched properly or built upon will be ineffective and unduly costly. I and my team are worried about that. One Department worked particularly well with us; I will not name it now, but if members want to know, they can ask me.

We found that there was some willingness to cross the departmental divide, but that is a huge hurdle that must be cleared. Even in the Health Department, we will not be successful if a succession process is not in place. We might discover that we are unable to process a record because we may suddenly find that another Department has a scheme that has been pulled out of the ether and is being built upon in the most perverse way. I can think of such an example, about which I feel very strongly. Although it is not my job to talk about it, I will speak very briefly about it if I am asked.

I hope that that provides an idea of the medical and the practitioner side of things that will be addressed by Dr Hutton. We will all chip in, but she will mainly address that area. Dr Bergin will answer questions about the number crunching and organisational blueprint side of things.

The Chairperson:
Thank you for that very interesting presentation, Ken. Members are queuing up to ask questions. I am very interested in the matter; indeed, I went to America with you and PAPA, and we saw the desire of American Congressmen to flag up the issue of autism and financial support for autism in the USA. It was a very worthwhile visit, and the contacts that we have had since that visit have proved to be very helpful. We want to build on that work and ensure that autistic children and young people are looked after right across the spectrum of Departments.

It grieves me just as much as it grieves you if Departments do not play along; autism is a cross-departmental issue that concerns the Departments of Education and Health and, indeed, others where matters such as employment are concerned. Therefore, a wide spectrum of Departments is involved. I join with you in being concerned that the appropriate support from and contact with your team has not been as forthcoming as you would have liked.

Having worked closely with PAPA, I am concerned about the level of contact that you may have had with it. Did you have any contact with it? Did the membership team have a volunteer that allowed PAPA to have an input? For 20 years, it has been at the forefront —

Lord Maginnis:
I think that you are asking two questions, Chairperson. The first question is whether there was a member of the voluntary sector on the actual team. The answer to that is no. The second question is whether there were contributions and whether the sector was consulted fully. The answer to that is yes.

I am not supposed to know that it was intended that the original team would be 17 strong. That would probably have kept us going to this time next year. We actually had a small, specialised team of consultants, and then we consulted widely.

You mentioned the American visit, which was very useful and quite enlightening. America is such a large Administration, so we decided that our situation was different. Huge amounts of legislation are needed in America because of the central and state Administrations. If proper co-operation does not exist, it may come about that we will have to, God forbid, have legislation here in Northern Ireland.

However, the administrative basis on which things can move ahead does not initially require legislation; Minister McGimpsey and his team can proceed without legislation on many matters, including early identification, assessment, diagnosis, and intervention. One of the difficulties that I have with legislation — and this point arose during our inquiry — is that without a cohesive cross-cutting interdepartmental system, too much time will be spent trying to reach a compromise between Departments — everybody will want their pound of flesh. That will mean that in two years, the legislation would still not exist, and when it eventually did, it would not meet immediate needs.

With co-operation, which I hope is forthcoming, I believe that the proposal will meet the health needs of a child who has been identified as autistic and will carry him through the first three or four years of life. Would you like to add to that, Sandi?

Dr Sandi Hutton (Independent Review of Autism Services):
Not really, except to very much welcome your comments, Chairperson, about the importance of having a multi-agency approach to any problem. As paediatricians and doctors, we are only too aware that the development of a child is not just a matter for health services or is dependent on health care input — it involves everything from environment, housing, education and many other issues. Nowhere is that more evident than in the management of the autistic spectrum disorder, which has an impact on every facet of how the child, young person or adult interacts with society. I echo what Ken said about the importance of engaging everybody.

The Chairperson:
As I said, I am happy to repeat that it is essential that we have the involvement of the Departments for Employment and Learning (DEL), Education, Health and Environment. If we do not, we will not get far in providing the necessary support and service provision for children, young adults and those of working age who are on the autistic spectrum.

Before members ask questions, I will make the point that I have been involved with PAPA for many years, and I know how dedicated that organisation has been in the work that it has done in pioneering projects such as Access Keyhole and Rainbow Kids. However, the National Autism Society (NAS) in England has been referred to in the report’s glossary on around six occasions, whereas there is no reference at all to Northern Ireland’s autism charity. I am concerned that recognition has not been given in the report to the sterling work that has been done and pioneered by the voluntary sector.

The voluntary sector plays a major role. I know that Ken and I might disagree on the number of people who are required on a committee to examine an autistic spectrum disorder, but I believe that PAPA having no voice was a major flaw. All that I will say is that that organisation had no representative on the panel — Ken will probably be straining at the leash to comment on that, but I have made my point. The voluntary sector plays an important role to play, and it should have a say in anything that emerges from that consultation process. I hope only that all the interested persons and organisations will work together holistically on this important issue.

Mr McCallister:
I support what the Chairperson, Lord Maginnis and other members have said. We discovered the silo mentality of Government when the Committee was carrying out its inquiry into suicide and self harm. There should be involvement from the Department of Health, the Department for Social Development, the Department for Employment and Learning and the Department of Education.

Support groups are very worthwhile for parents, particularly in early diagnosis. We visited a centre very close to here, and we know the importance of that support.

You spoke about having difficulty with other Departments. I hope that you are not having difficulty with the Department of Education, as this issue should be a focal point for that Department. Where do you see the Department of Education linking into this, particularly with regard to the centre at Middletown? Did you get into many of those details? I realise that the issue is mainly a report for the Department of Health, but some people could push that centre as a key component for any autism strategy.

Lord Maginnis:
Although I am not noted for being a diplomat, I understand fully the nature of your question. We felt concerned enough about that project to write an advisory piece to the Minister. I do not know whether he has published that piece, or whether the Committee is aware of it. However, if you are not aware of it, that is between you and the Minister.

I am stepping outside my brief to some extent here, but we are talking about the creation of a large new centre that will have 75 full-time staff, deal with 140 children per year, and cost about £6 million per year. Those are ballpark figures. Across Ireland as a whole, if we are working to an equality agenda, that should be extrapolated to 8,400 children, which is roughly the number of children on the autism spectrum across the whole of Ireland. That is about 60 times the 140 children that can be accommodated at Middletown, and would cost £360 million. Extrapolated further, from five weeks to 50 weeks, it would cost a massive £3·6 billion per year.

I do not think that the intention of the equality agenda was to make life equally inaccessible and awkward for everyone. I think that it means that we look at the extent of the problem. We know that every year there will be about 200 new cases coming on to the spectrum in Northern Ireland. In the Irish Republic, there will probably be about 450 new cases. Therefore, there will be 600 to 650 new cases every year across the whole of Ireland. One must consider the impact that that will have on parents on the north coast, Donegal, Tipperary, the hills of Wicklow and elsewhere. The most economically disadvantaged parents cannot afford someone to stay with the family, and might be unable to travel. We are setting an important task.

However, that is outside my bailiwick. Because I have been asked for it, I give you my honest assessment: I do not believe that this particular experiment — for experiment it is — is based on the sort of sound foundation that we have tried to lay for autism services in Northern Ireland.

Dr Bergin has done much of the number-crunching and the work on structures. It might be useful to hear about services delivered locally but co-ordinated regionally. We are seeking an opportunity to expand and consult outside our own region.

Dr Stephen Bergin (Independent Review of Autism Services):
The vision for the future is that the overall network of structures across the region should be brought together into a regional consortium. A local service — for example, the Southern Health and Social Care Trust or the South Eastern Health and Social Care Trust — is made up of perhaps six or 10 practitioners. That is small, and there is no critical mass. It would be much better to bring all those teams together in a network. I do not mean a regional service, but rather a voluntary coalition among the various practitioners to foster best practice, develop care pathways, and introduce voluntary groups at regional level. That would create a strong hub that could work with various spokes across the region. We do not have that at the moment: coverage is patchy, to say the least. Many practitioners have been put in post over the last three years, some only very recently. As they are new to their jobs, they are not yet making an impact and they need an opportunity to get their feet on the ground.

Therefore, we look to the development of such a network. It would be as strong as any across the water, able to link up with similar networks that have been established in Scotland. The latest evidence suggests that such a network would be at the cutting edge. All sorts of resources could be incorporated: for example, advice to parents and access to the Internet. That would allow for a consistent approach across the region, as opposed to the work of various micro-teams, which is not what we want. That is my vision for three to five years’ time: a strong hub of practitioners which can link up with others across the world.

Mrs Hanna:
Good afternoon. You are most welcome. Thank you for the presentation; your written report is helpful and informative. I worried when you told me that it was incomplete: I learnt a lot from it. I agree with you that there is a great lack of awareness and understanding among us all — and I include myself in that. There is confusion, also, and concern because of the growing numbers of autistic children. The anticipated increase is a huge number. The resource implications of that are enormous. We have heard much about the value of one-to-one therapies, and there is great concern about how we will cope with this.

I was interested to hear Dr Bergin speak of the networks, the spokes and the hub of the wheel. In view of the growing numbers of autistic people, do you think that this approach is practical? How much contact have you had with the Department? The implications of this for the workforce are immense. Needs vary so widely, and the report was very good in that it defined the condition from mild through to severe. I am using layman’s terms.

It is hard to get one’s head around how the proposed system will work because of the numbers involved. How far have your deliberations with the Department proceeded? You have laid out your recommendations well, from early intervention onwards. If everything you recommended took place, and if people were quickly diagnosed, that would be an enormous advantage.

It is almost as though we are looking again at our inquiry into the Bamford Review and mental-health provision. Although I am not equating this topic with that one, we examined the building blocks with which one might construct a whole service. This situation seems to be like that. Even though you have the big picture of what is required, the question is where to start, and your recommendations play a part in that.

Lord Maginnis:
The difference between the Bamford Review and our work is that —

Mrs Hanna:
They are totally different.

Lord Maginnis:
Bamford raised many questions on a vast number of topics. As Sandi Hutton will tell you, we did not try to ask questions so much as try to provide the answers.

Mrs Hanna:
Your work deals with one area, so I appreciate that it is quite different. However, there are similarities in the numbers and the resource and workforce implications.

Dr Hutton:
We examined and analysed closely the exact numbers of staff that would be needed at the different points of the child’s progress on his or her journey, from the first suspicion of autism to early intervention. Many of the resources exist already. We have health visitors, paediatricians and therapists who are skilled in the early recognition of autism. However, the numbers of staff must be beefed up in order to deal with the incoming annual uptake of kiddies who are suspected of having autistic spectrum disorder and those who are found to have it. Obviously, more cases are suspected than are ultimately diagnosed.

That is actually all manageable. What is more, dealing with autistic spectrum disorder and enhancing resources in therapies and diagnostics will actually also help the practitioners to pick up on other developmental problems. Therefore, that will have a very enriching result for all children. However, we need the funding for early intervention and diagnosis to be ring-fenced so that it is not diluted by other demands on everyone’s time.

I emphasise that we have always been very keen to stress the huge importance of our voluntary-sector colleagues, particularly in the area of training and awareness, because everyone has commented on the fact that not enough is known about the condition among the general population or among specialists, whether medical professionals or teachers. I hope that that will be one of the big drivers of change, which I expect will be mediated through the consortium and the managed clinical network. We will increase the knowledge base, and we will be looking to our voluntary-sector colleagues to help greatly with all of that training.

As the Chairman said, over the years, the voluntary sector has amassed much expertise in training and informing people and in setting up services that did not exist previously. We hope that we will now have the statutory basis to take over the delivery of the services, but we will need massive training input, and the voluntary sector can play a massive role in that.

Mrs Hanna:
I take on board your remarks about the cross-departmental element. We talk about that a lot, but we do not do anything. Real co-operation must take place in many areas, not only in health and education, but wider afield.

Ms S Ramsey:
I wish to make a couple of comments on the presentation, so I hope that the Committee will bear with me and let me finish.

It is useful to have this report in front of us, and I commend you for taking the time to talk to as many groups and individuals as possible. However, I share the view of the Chairperson and John McCallister that it is a shame that experts from the community and voluntary sector were not on the panel from the outset. There is a mindset that we need to get away from. I appreciate that the witnesses are smiling at that. However, we must get away from the situation in which the professionals tell parents what the issues are, because parents are the real professionals who deal with this issue. No one can tell parents what they are going through, unless they live with a child who has autism or associated illnesses — and I do not.

The reason I say that is because the key theme in this report is the joined-up approach. It is a pity that while your report calls for a joined-up approach, the experts in the community and voluntary sector were not included. As a society and a Government, we must make the journey easier for parents and families.

I do not share your view on the autism centre, and I know that it is a personal view, because the specific question is about moving that issue on. The reality is that the funding is not available for such a centre in the North. I realise that it is not in your remit to answer, but would the Health Minister fund a centre for autism in the North? I think not. Middletown was intended to alleviate some of the pressures on our own Health Service by getting funding from both the Irish Government and the Assembly. Rather than being negative, we should ensure that that matter moves forward. My question is this, and it is not directed at you because you are just a review team: if we are so good, why are there 600-700 undiagnosed cases of autism each year?

I welcome the review’s proposal of a joined-up approach. John McCallister mentioned the attitudes of other Departments. What is the input from the Department for Employment and Learning on this matter when children get to transition age?

The Minister welcomed your initial report and said that he would turn it into an action plan that will go out for consultation in August. If we are talking about a joined-up approach, what other Departments or Ministers will provide input for that action plan? It would be regrettable if, over the summer recess, the Department of Health produced an action plan without input from relevant Departments, specifically Social Development, Employment and Learning, and Education.

What will be the time frame for the implementation of the action plan? You say that additional resources are needed immediately in order to deal with the 600-700 undiagnosed cases. Has the Minister indicated that money is available? We have been told that there is no additional money to implement the Bamford Review recommendations.

I do not mean to sound negative, but it is all well and good this report and various recommendations coming before this Committee, but is the money available, or are we once again raising people’s expectations with false promises? Are we saying that we need to deal with the 600-700 undiagnosed cases? The Minister pulls out an action plan, but will it be shelved for another five years?

Lord Maginnis:
There are couple of almost political points that I will answer. We are talking about getting a bigger return for money and from personnel who are already in place, as Dr Hutton said.

I acknowledge the point made by the Chairperson and by Sue Ramsey that we did not include a member of the voluntary sector. The problem is that we did not have a coherent statutory sector. If we had brought in one representative from the voluntary sector, we would have been killed in the rush for every other interest to get around the table. Our task was to ensure that there was a firm blueprint, a statutory blueprint, whereby we could get the best out of our voluntary and community sector, and from the very best professionals who are dedicated to doing the right thing. I will defend that approach, and hope that the Committee will understand it in those terms. It was impossible to build when we were unaware of our exact mandate. We thought that our mandate was to organise the statutory sector, funding and expertise, and co-ordinate all those aspects into a cohesive unit.

Ms S Ramsey:
Who appointed the review team?

Lord Maginnis:
The Department.

Ms S Ramsey:
Did you have any input?

Lord Maginnis:
You will be relieved to hear that I did not. The Department did an excellent job — better than I could have done.

We have considered the backlog. Dr Bergin will outline how we are tackling that issue.

Dr Bergin:
My main job is mental-health commissioning. I work in the real world with real money. I cannot do too much blue-sky thinking; I had to consider how we can deliver a pragmatic process and a robust, evidence-based model, and I endeavoured to do that based on the incidence and prevalence figures. Some data in the report demonstrates that we could make a real difference.

The Department — to its credit — has put money into diagnostics and early intervention to support existing practitioners, but has overlooked intervention and support services. Although some of that resource will, certainly, be statutory, those services do not have to be delivered by statutory practitioners. Voluntary-sector partners and various agencies could be incorporated into that support service, because it is not just about consultants and therapists, it is about broader family support. Housing, vocation, employment and transition planning from childhood to adulthood are all relevant issues, on which the voluntary sector could offer its support. I will not go through the exact mathematics, but we have endeavoured to use the figures to arrive at our conclusion.

I tried to calculate how we could establish a reasonable treatment service in three to five years’ time, because that is currently lacking. We were unsure how to do that, because none of the literature provides a comprehensive answer; it outlines required inputs, but does not tell you the amount of money or number of people required. Therefore, we need to link that to the actual numbers per year. Therefore, calculating the inputs — family support, the number of hours per week or per year — is a complex process. However, we have tried our best, and a review incorporating experiential learning might be useful. The network must consider those sorts of figures and determine whether the informed assessment of need was correct. The network should track those figures annually.

Ms S Ramsey:
Although that is relevant, my question is about Middletown. You mentioned the regional aspect — was the decision against Middletown made by the review team, or is it a personal opinion?

Dr Bergin:
It is my professional opinion as a consultant public-health worker on the board, based on the opportunity cost and how best to use scarce public resources. I am not in charge, but I would advise my chief executive that, for £6 million, these recommendations will deliver for the entire population in Northern Ireland — as opposed to 2% of it.

Ms S Ramsey:
So it is a personal opinion.

The Chairperson:
Will only 2% of Northern Ireland benefit from Middletown?

Dr Bergin:
Per year.

Ms S Ramsey:
We need to examine those statistics.

The Chairperson:
Without going into heavy politics, I am interested in, first and foremost, the children in Northern Ireland. Personally, I have always been concerned about the location. If the Middletown location will not benefit the wider community in Northern Ireland, I am even more concerned.

Yes, we can co-operate with the Republic of Ireland on many issues, but we must get our own house in order. We can learn from, and exchange practices and so forth with, the Republic, but the primary focus should be on the children, adolescents and adults in Northern Ireland.

Dr Hutton:
It is not appropriate for Sue to say that Dr Bergin was speaking personally. He expressed his view as a public-health consultant and as a paediatrician with a background in public health. I share his view that the opportunity cost must be examined. There are limited resources, and those must be targeted to serve the best interests of as many children as possible. The resources on the ground are extremely limited and must be increased. Therefore, those resources must be targeted to help the children. Although we focus on the money that is available in Northern Ireland, we are also considering the possible extension of the managed clinical network to an all-Ireland network, just as cancer services, and so forth, are beginning to involve the whole island.

The Chairperson:
That is not our immediate focus.

Dr Hutton:
Absolutely, but that does not negate the fact that we can benefit from it.

Ms S Ramsey:
I want to know if the opinion about Middletown is that of the review body.

Lord Maginnis:
Yes. It is the unequivocal view of the review body, as reflected in the report that we sent privately to the Minister, which may not have been published. Sue was absolutely right on two counts, first of all when she mentioned the backlog in identifying, assessing, diagnosing and producing intervention for children. The Middletown centre will not do any of that work; the £6 million will not go towards that in any way. Perhaps Middletown knows what it will do with its money, but it will not shorten the waiting list.

One of the plans that we built into the report is that through good management, sharing resources and initially, if necessary, temporarily moving resources, the three-year waiting list could be eradicated in between a year and 15 months. I hope that that provides some encouragement. Sue was right to identify that as a major problem.

The Chairperson:
Members are satisfied that their questions have been addressed. I thank the team for coming and giving the Committee its insight into the report. I reiterate that if we cannot get Departments to co-operate in the way that we would expect — and it is a crying shame that we have not been able to do that — at least we can still fully utilise the professionalism of Parents and Professionals and Autism Northern Ireland (PAPA). PAPA has come through years of representing parents and fighting for the rights of children with autism spectrum disorder.

An opportunity was missed to use PAPA to embarrass Departments that were sitting on their thumbs and not getting involved in the real world by making their required input to the review panel. Thank you for your presence today; we look forward to watching developments.

Lord Maginnis:
Madam Chairman, I thank you and the Committee for your graciousness. We could talk for much longer, and I could have told Sue about the £250,000 investment in teacher-training colleges, at the request of the review body, to assist them to put in place an autism-specific programme on their special-needs courses. Indeed, the colleges have come back to us and said that they will try to incorporate that into their general degree course. All of that is very encouraging and has potential. We are grateful to you for giving us the opportunity to be here today.