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Children: Developmental Care and Autism

Volume 744: debated on Tuesday 19 March 2013

Question for Short Debate

Asked By

To ask Her Majesty’s Government whether they have made any recent evaluation of the efficiency of administrative health units with regard to the provision, assessment and diagnosis of developmental care for children with special needs, particularly in relation to Autism Spectrum Disorder.

My Lords, I appreciate the opportunity to raise the albeit touchy issue of government and administration—from my perspective, perhaps I should say government versus administration—particularly in so far as it impacts on the delivery of health services. Despite having been married to a nurse for the past 52 years, my analysis will not presume to deal with matters clinical but will very much deal with delivery, especially concerning early intervention and diagnosis relating to children with special needs.

Autism spectrum disorder—ASD—is an area that increasingly confronted me as a Member of Parliament in days gone by, when parents would come to me in desperation. Despite Kanner having defined the condition as long ago as 1943, I was unfamiliar with it even though I trained as a schoolteacher 15 years after that. I realised that there was virtually no departmental provision of any consequence. Therefore, when the Northern Ireland Assembly eventually got going and I was fortunate enough to have a colleague, Michael McGimpsey, as Minister of Health, I prevailed on him to such an extent to carry out an independent review of autism services that he asked me to chair it.

In response to a Parliamentary Question during direct rule, I had been told that in Northern Ireland there were 686 children waiting up to 35 months for assessment and diagnosis. That meant that children were virtually in school before they had the benefit of any meaningful interventions. Three years, often more, were lost—developmental years that could never be retrieved. I want to put on record my gratitude to Angela McLarnon, who at that time headed up the Northern Ireland cohort of around 600 health visitors; she was the one who made things happen. As a result of the review we carried out, we now have uptrained all our health visitors. No child waits more than 13 weeks before assessment and diagnosis, and every child gets a home visit for general developmental assessment at two years old.

I want to say two things at this point. The ratio of health visitors to the birth rate in Northern Ireland is roughly 40:1, while here in England it is 83:1. I know there is an idea that the number of health visitors will be increased by roughly 50% here in England but I contend that this country needs to be aiming at something like a 100% increase in health visitors if it is to have the same service as we have in Northern Ireland. We all know the lifelong importance of early intervention in special needs cases. Before anyone dismisses that idea on the basis that England is more urban than Northern Ireland, I will partly concede that point—but only partly. I calculate that the planned increase is at best 50% too little and that assumes that there is a comparable and specific ASD uptraining in place for all health visitors. Is that the case? I am sorry to bore everyone with statistics, but the situation and outcome needs to be assessed on the following basis. Health visitors in England should, on top of their other responsibilities, aim to make one general developmental assessment home visit per working week. This requires a maximum ratio in terms of annual live births to health visitors of 45:1; it should be no greater than that. I am talking about 16,000 health visitors, not the proposed 12,000 and certainly not the current, unacceptable 8,000 plus.

That is not the whole story, however. Given that 1.2% of live births will be children on the autism spectrum, English health services will cater for roughly 8,700 children with that condition every year. Extrapolate that to school age and each health visitor is being asked to monitor five children with ASD on an ongoing basis, which is twice the number we in Northern Ireland consider practical and acceptable. As a schoolmaster, I believe there should be an overlap between health and education, which does not properly exist today, particularly in this specific area. We should be talking about a monitoring process up to the age of eight. I do not expect the Minister to give me a detailed answer, but I hope that she will at least be able to reassure me that her department will take note of something that in my experience will help to meet our responsibility to those with ASD.

One final thought. Just like the rest of us, those on the spectrum fall within the normal bell-shaped curve; 7.5% brilliant, 7.5% significantly disabled and 85% who can live very normal lives. I am sorry to put it as crudely as that, but it is the challenge facing us today. The two year-old general development assessment is the key, not only to autism, but to a multitude of other conditions. I will not go through them all but they are conditions such as dyspraxia and dyslexia, which are often classified under the term “comorbidity”. Sadly, we no longer have answerable and responsible government as I once knew it. Over the past 20 years we have a mere delegating procedure and this is the challenge I ask the Minister to address today. Where among the disparate layers of the arm’s-length administration can we address this issue on a co-ordinated and cohesive nationwide basis? Is it among 10 strategic massive health authorities or among 151 primary care organisations that vary in population from less than 100,000 to more than 1 million?

I will conclude. If it is not the Government who are going to preside over and be answerable and accountable among this mish-mash of administrative units, are we condemned to another postcode lottery? The Minister knows that I am not targeting her personally, but if we are to have effective, early-life healthcare her department needs to face up to the real challenge of there being too many managers and not enough workers and to feel the accountability that pervades most of society today, not least our health service.

My Lords, the noble Lord, Lord Maginnis, returns to a subject different facets of which I have heard him talk about before. Primarily, it is based on the self-evident fact that if you identify a problem early you stand a better chance of reaching a better outcome. So much for the rocket science involved in this, but it is quite obvious when you are doing that.

How do we do this? There is an assessment at about the age of two. The briefing I received referred to classical autism: those with certain patterns and conditions such as low IQ and behaviour that occurs. You are able to spot that by about the age of two. That probably fits more neatly into what the noble Lord was saying than anything else we will get across. Then, as the noble Lord again pointed out—he can feel free to shoot my foxes as there will always be another one coming along—that will not apply to everyone throughout the process, so assessing until the age of eight is another good idea. If somebody does not fit neatly into that classical band, it is not very obvious that they have a problem. For instance, if that person does not get much pre-school training, education et cetera, their problems may only manifest to a noticeable degree later on. Also, the level of training of the person observing them has to be fairly exact. As you go through the educational process, many people in the higher-functioning part of the autism or Asperger’s spectrum have problems that a teacher will observe not in the classroom but in the playground because that person will not socialise normally.

There has recently been a little splurge of information about autism in the papers. Some of it was accurate and some of it was not. Even a little test in the Times asked how far on the spectrum you were. If you got to 15 on this test, it said “Don’t worry, you are still quite normal”. I, in a dark moment on a train, took the test thinking, “I wonder how strange I will come out”. I only got 12, thought that was a bit low, went back and discovered that I should have marked myself at 10: it is one problem I do not have. But if we are going to do this, we need a way of assessing at various points where that intervention comes in. One of the classic ways for adults to be discovered on the Asperger’s spectrum is when they develop mental health problems: people who cannot cope with a normal environment.

Effectively, there are huge savings here for government. I thought all Governments were interested in savings, or should be. Let us face it, this Government will be more interested than most. That is not a position I particularly relish but it is the fact of the matter. If you get in reasonably early, you stand a better chance of being able to maintain the person throughout their education and working life. Indeed, there is a better chance of them being able to handle the bumps and bangs of relationships later on. Will my noble friend give us a rough guide as to what the level of intervention will be beyond that initial assessment at age two? If we just concentrate on autism, because other conditions will come in, exactly how much training will be required at the various stages of the education process? How much assessment is going on?

The National Autistic Society suggests that at least the SENCO in every school should have specific training in how to spot autism. Autism may not be the highest-occurring hidden condition, but it will certainly be there regularly throughout a teacher’s career. There should be better basic training so they are able to spot a condition and refer on—we do not want to create experts. They must also understand when they are given advice. Parliament is one of those places where occasionally, from a standing start, we are told, “Go and make yourself an expert”. Every person who has stood on their hind legs in this Palace has had that experience with something they had not come across. We all know that it takes time to get your head around a new problem or way of thinking. Unless that is instilled throughout the education and health services, with a basic level of understanding where one knows where to refer back to and where to refer on, you will not be able to do this. It would help if my noble friend could give us an idea of where we are on this and where we are going. This should not be a party political point or football. It should be a point of basic principle because unless you have just enough knowledge to be able to access and call in the help, you will miss this and do it late, causing secondary damage to that person’s life and costs to society.

My Lords, I, too, thank the noble Lord, Lord Maginnis, for allowing us to have this important debate. He made some important points in his opening speech and I, too, should like to focus on early intervention. Both noble Lords made it clear that they regard it to be of importance. I agree.

I should also be interested in the Minister’s response to the point made by the noble Lord, Lord Addington, about the need for regular assessment after the initial early intervention. I was particularly taken with his remark that if you can have early intervention and regular assessment, your chances of helping people to have much better life outcomes is good not only for them, their families and loved ones but in terms of the likely demands on the state over the years. There must be a persuasive economic case for up-front investment. Perhaps the noble Baroness can respond to that.

As to the experience with health visitors in Northern Ireland and the comparison with England, it was extremely interesting to hear the ratios mentioned by the noble Lord, Lord Maginnis. I suppose that it raised a bit of prejudice about the funding that goes to Northern Ireland, but I shall desist from making further comments on that. Does the noble Baroness recognise those ratios because, on the face of it, your chances in Northern Ireland of having health visitor support is clearly much greater and more intense than in England? I do not know if the noble Lord knows the answer to this but, given the importance of speech and language therapy, I wonder if there is a similar issue about the number of those important professionals who can make a huge difference to people affected by this condition.

I cannot help the noble Lord with figures, but we are certainly able to concentrate the demand for those interventions. They may relate to sensory issues, speech or all sorts of things. Those interventions can often be carried out in the home or school environment; they do not always require a medical practitioner—although, on occasions, they do.

I am grateful to the noble Lord. One of the powerful points he is making is on the number of professions there are. It is also a question of organisation, and I should like to come back to that issue because I think he is suggesting that in Northern Ireland the stability of the organisation of health and social care enables a much more co-ordinated response to be given.

I want to come back to the English situation, which is worse than he stated because of the changes that are to take place from 1 April and are apposite to his comments. We have been given a very good research paper by the Library in anticipation of this debate. The briefing note refers to the report from Brian Lamb commissioned by the previous Government, the follow-on in this Government’s initiatives, and the identification in March 2011 of some of the problems—particularly of,

“parents having to battle to get the support their child needs … SEN statements not joining up education, health and care support … multiple layers of paperwork and bureaucracy”,


“a confusing and adversarial assessment process”.

Clearly, it is very important that all these issues are tackled. We welcome the prospect of legislation and the publication of draft clauses, as well as the work done in Parliament to comment and reflect on those draft clauses.

I want to express some concerns, particularly in education. The Government have clearly identified gaps in services between different sectors, education, health and care support. My concern is with the demise of local education authorities as significant players in education in England. I remember when we debated the new Government’s first children Bill that there was particular concern about provision of SEN under the new structures. Does the Minister think—and how does she think—co-ordination of SEN in local authority areas is now happening with the reduction in authority of LEAs and the freedom of academies and free schools to plough their own furrow? I know that academies operate in accordance with the individual funding agreement and obligations are imposed on them, but it would help the Committee to know that the Government believe there is machinery at local level to ensure that there is proper co-ordination between schools, linking into the health service. I point out to the noble Baroness the recent Ofsted reports on the first tranche of free schools is not exactly encouraging about their performance. Could she help me in relation to whether Ofsted was able to comment on those schools’ responsibilities in relation to SEN?

It is clear, too, that the health service has much to do, and I fully accept that. Co-ordination between health, education and social care services is very important indeed. The noble Lord, Lord Maginnis, referred to the English situation as of now and to the 10 strategic health authorities and 190 or so primary care trusts. He referred to that as being a bit of a mess—but if we were coping only with the current structure. The fact is that from 1 April we are losing strategic health authorities and primary care trusts and replacing them with clinical commissioning groups, which are untried and untested. We are losing the essential leadership role of strategic health authorities, which are being replaced by local area offices of the NHS Commissioning Board. All the signs are that those local area offices neither want to nor have the capacity to give the kind of leadership that is required. So at the local level, within each local authority area, we have a worrying picture of, on the one hand, local education authorities losing a lot of the levers that they used to have, and, on the other, of a health service being broken up between lots of new and different organisations. It is very worrying in terms of the co-ordination required. Will the Minister reflect either now or in writing on how she thinks one can achieve a co-ordinated approach in relation to SEN, particularly in relation to the group that the noble Lord is mostly concerned with, in the new structures? That is the only way in which to get early intervention and the continuous assessments, which noble Lords believe should be produced.

My Lords, I am very grateful to the noble Lord, Lord Maginnis, for raising this issue and for introducing it so effectively. The noble Lord is right to emphasise the importance of this disorder, and he and my noble friend Lord Addington, as well as the noble Lord, Lord Hunt, are all absolutely right to stress the importance of picking it up early and supporting people from the earliest stages. As my noble friend Lord Addington points out, it is important to pick it up later and monitor the progress of a child.

I want to place special emphasis on the role that the new commissioning bodies will have in ensuring that children with special needs, including autism, receive the care that they need. I hope that I can reassure the noble Lord, Lord Hunt, in this regard. We know that there is a need to improve the early identification and assessment of special educational needs and thus remove the duplication and frustration which many families have encountered in securing an assessment. That is absolutely vital. We have already made progress in delivering the necessary improvements. For example, we have introduced an early years progress check for children at the age of two in order to pick up problems early and tackle them. Several noble Lords have mentioned this assessment. It is extremely important in terms of the early identification of autism. We recognise the importance of a key universal service for improving the health and well-being of all children through health and development reviews, immunisation programmes and so on. Between the age of two and two and a half, a child will have a full health and development review at which parents will have the opportunity to raise any concerns, ask questions, and prepare for the next stage of their child’s development. This can trigger the need for a formal SEN assessment which must include doctors, educational psychologists and paediatricians if that seems to be necessary.

Before the Minister moves on, can she clarify one point? Is this a procedure whereby parents will be aware that they can shop, if I can put it like that, for this sort of support or is it something that every single two year-old will be given as a matter of course?

It is planned that every two year-old will have that kind of assessment. It is extremely important not only in terms of autism, but for picking up other problems.

The noble Lord, Lord Maginnis, asked about the availability of health visitors. To support the delivery of the Healthy Child programme, we are committed to expanding the number of health visitors—he is quite right about their importance—by a further 4,200 full-time equivalents by 2015 and to develop health visiting services in order to improve health outcomes and reduce inequalities.

We recognise the pressing need for a new system of commissioning special educational needs provision, so I hope that noble Lords will be pleased to hear that the Children and Families Bill will introduce this. The provisions of the Bill will build on the new approach to commissioning introduced by the Health and Social Care Act 2012. They will introduce an integrated approach to meeting the needs of children and young people with special educational needs, requiring CCGs and local authorities to make joint commissioning arrangements and focusing on a single, co-ordinated assessment involving a range of professionals. Moreover, these arrangements can include people up to the age of 25. It is extremely important that they should go beyond the transition points that others have found to be problematic. The assessment process will result in an individual education, health and care plan. I hope that noble Lords are pleased to hear about this because it will bring together the health and education sides. The process will be focused on improving outcomes for the child. The commissioners, working together, must agree their relevant contributions to delivering the plan, and they will have to work out who is going to be responsible for the different elements.

These plans will not be developed in isolation, of course. The boards and the CCGs will co-operate with relevant local authorities and participate in their health and well-being boards. Each board will provide a forum for the effective assessment of local need, and special educational needs will be part of that so as to ensure the translation of those commissioning plans and arrangements into something that is effective. Health and well-being boards will undertake a joint strategic needs assessment and a joint health and well-being strategy for the local authority area. The CCG will draw on this in developing its annual commissioning plans. Moreover, health and well-being boards will help to ensure the accountability of CCGs by giving their opinion on the extent to which the commissioning plans take account of the local strategy and how the CCG has contributed to its delivery. Noble Lords need to bear in mind that special educational needs are in there, and they have to assess what is being provided against that.

The new arrangements will be introduced in 2014, depending on the passage of the Bill, but a number of pathfinder local authorities are working with local children and their families in piloting new approaches. As the noble Lord, Lord Hunt, will be aware, the mandate for the NHS for the next two years has indicated the particular need for improvement, working in partnership across different services in supporting children and young people with special educational needs and disabilities. In particular, it gives the NHS Commissioning Board the objective of ensuring that children have access to the services identified in the agreed care plan. I hope that that will reassure the noble Lords, Lord Maginnis and Lord Hunt.

We are also amending the Children and Families Bill to place a duty on CCGs to secure the necessary health services in an education, health and care plan. This is a significant step, and highlights how much importance we attach to ensuring that the NHS delivers the right service for children with special educational needs.

We want to ensure that CCGs and local authorities, as commissioners, and the health and care professionals who provide assessments and diagnoses are supported, particularly in relation to their education and training. The noble Lord, Lord Maginnis, is absolutely right to stress the need to link up health and education.

For the past two years, the Department for Education has been funding the Autism Education Trust to develop tiered training materials for schools, as well as national standards for provision for children with autism and a competency framework for those who work with children with autism. These are relevant points for the noble Lord, Lord Maginnis, and my noble friend Lord Addington.

The new qualified teacher standards came into effect in September 2012. These have sharpened the focus on meeting the needs of children with SEN and disabilities. The Government have also strengthened initial teacher training and continuing professional development provision through the publication of additional online training materials for teachers of pupils with the most common and complex special educational needs, including autism.

We have also highlighted the importance of having good quality data that measure the outcomes which are most important to children and young people and their families. The work of the Children and Young People’s Health Outcomes Forum has informed actions across the health and care sectors to identify the best indicators of outcomes for this group, particularly in relation to the time taken from first presentation to diagnosis. The noble Lord, Lord Maginnis, highlighted this as being a problem, particularly in the past, which we certainly do not want to have repeated; we want to address that. One element of this is ensuring the effectiveness of transition at different life stages, particularly from children’s to adults’ services.

The recent University of York report into transitions for young people with autism highlighted that we need to do much more to support young people in planning for leaving school, gaining employment and living independently, while maintaining good health. The NHS Outcomes Framework for 2013-14 includes the forum’s proposal that all data should be presented in five-year bands up to the age of 25 to enable the effective monitoring of that transition. That is quite a significant change. Here, too, I want to reassure my noble friend Lord Addington in relation to those children whose need for support does not become apparent until they are well established in school. The Government’s approach is to strengthen awareness in schools through staff training; for example, extended placements in special schools for trainee teachers. We want to ensure that needs are detected as early as possible, but I emphasise that at any point the school can request an assessment by the local authority. The education, health and care plan approach provides a basis for taking an all-round view of the children’s needs across different sectors. Of course, schools are providing additional support for many children through teaching assistants.

My Lords, teaching assistants have rather a patchy record when it comes to implementing the current statementing system. For instance, there is a nasty tendency for them to become a babysitter for a child who is having trouble within the class. I suggest the Government should look at this because it is something that has been going on for years. Unless you get that person trained to at least implement the strategy across all disabilities, it will not deliver the required outcome but may simply keep the child out of the way of the teacher.

The teaching assistant may be assisting with other children while the main teacher focuses on those with particular needs. My noble friend is absolutely right that it is extremely important that the right and appropriate support is given according to what a child needs, which is why those plans I mentioned are so important.

Partnership working will be the key to making a difference. We want to work closely with partner organisations, such as the Council for Disabled Children and the National Autistic Society. However, the most significant partners, if you can call them such, will be the patients and their families. The joint arrangements for assessment will be built around the individual; it is a bespoke plan tailored to the needs of the individual and agreed with them and their family.

I am afraid I am running out of time and I will write on any points that I have not picked up. I want to emphasise, however, that clinical commissioning is built upon patient involvement particularly for this group, whose needs have not always been well met in the past. This will perhaps be the most important factor in ensuring they get the care and support that makes the difference to them.