Children and Families Bill

Baroness Benjamin Excerpts

Wednesday 23rd October 2013 Grand Committee

[Baroness Grey-Thompson (CB)]

My Lords, I rise to speak in support of my noble friend Lord Low. I have looked to my experience in school—admittedly a few years ago—and thought about how the Bill might have affected me. I do not have special educational needs, and nor does my noble friend Lady Campbell of Surbiton, who is not in her place, but we both have access needs. My noble friend was considered to have considerable needs, and I was considered to have lesser needs. I was sent to a school miles away from where I lived. At the time it was the only school in South Glamorgan that was allowed to take wheelchair users. One might imagine that it was an accessible school. However, access was appalling and nothing in particular was done to improve it. There was an occasional ramp in the wrong place, and six people were employed to carry wheelchair users up and down the stairs. I hope that it is better today. I guess it was a product of its time.

Physical access would be better, but we have to take into account other interruptions for things such as physiotherapy in my noble friend Lady Campbell’s case or missing school. I missed a period of school to have metal rods inserted in my spine to stop it collapsing. I had to wear a plaster cast jacket from my chin to my hips for six months, which left me with very restricted movement, but nothing was done to make sure that I could stay in school. I just had to make do. I then missed a year of university because I snapped my metal rods—admittedly I was training to be a Paralympian, but that is an aside. However, it was such a major procedure that the only option for me was to write 12 essays and sit my exams within two weeks of university or to drop out of the whole year. There was nothing in place to think about how my impairment affected my ability to study. My noble friend Lady Campbell told me that because of physiotherapy and missing classes she was considered and classified as a “slow learner”. Accessibility and these other issues have a massive impact on the ability to learn and the opportunities that might arise out it.

I also wish to speak at the request of the noble Baroness, Lady Wilkins, who cannot be here today because she is at a family funeral. She strongly supports Amendments 87 and 105. She says the government Green Paper, Support and Aspiration, outlined a vision of support for disabled children and young people and those with special educational needs. It provided a vision of a more coherent and joined-up approach to meeting the needs of these children and young people. However, the Children and Families Bill concentrates on children with special educational needs only, to the detriment of disabled children. Despite calls from the Education Select Committee following pre-legislative scrutiny, and Members of the House of Commons during debates on the Bill, the Government have refused to include disabled children and young people without SEN within the scope of the reforms.

Research has estimated that around 25% of disabled children may not have SEN. Yet it is just as vital that these children and young people have access to the improved services and better co-ordinated provision that should be the outcome of the draft provisions. By making the changes proposed in Amendments 87 and 105, the Government would ensure that they keep their promise to make the new system better for all disabled children and young people and their families. In addition, the Government will also ensure that all local authorities work in the most streamlined and efficient way to provide services to disabled children and young people, and those with SEN.

[Baroness Benjamin (LD)]

My Lords, I, too, thank the Minister for his amendment because it is a great way of starting the debate. I have put my name to Amendments 220 to 222 because, as we have already heard, too many children with health conditions are not getting the support they need in schools and this problem needs to be addressed. They include, as we have heard, children with diabetes, epilepsy and incontinence and many others who all need greater consideration. However, I want to concentrate on children who suffer from sickle cell disorder, an invisible illness.

There is a strong feeling among doctors, medical practitioners and those working with children who suffer from sickle cell that provision of community nurses who deal with sickle cell sufferers should be expanded and more resources made available in schools. According to a British Educational Research Journal article, many young people who suffer from sickle cell disorder report extensive negative experiences at school. Around half have been prevented drinking water in class and going to the toilet. These are simple, basic needs of sickle cell sufferers. More than one-third were made to do unsuitable exercises and were called lazy when they got tired because of their sickle cell condition. Awareness needs to be raised by nurses visiting schools whenever and wherever necessary to support and educate staff, particularly sports teachers, about simple practices such as children getting dried off quickly after swimming, cooling down after vigorous exercise and being allowed to drink freely in class. Staff also need to be aware of the brain problems, such as silent stroke, that can occur at any time to those suffering from sickle cell.

Young people were reluctant to disclose that they had sickle cell, as they found many teachers were not knowledgeable about the disorder and felt it might be seen as a disadvantage. In some cases it can be, because if they have an attack or a crisis they have to miss lessons at school and therefore do not reach their full potential. It is all about equality, about educating schools and about training. The provision of specialist nurses in the community is also patchy and not well resourced. This needs to change.

The Sickle Cell Society believes that there needs to be a specific guide for schools on sickle cell disorder, rather than relying on generic guidance. Managing Medicines in Schools is limited because it refers only to medication and what to do in an emergency. It misses out the whole area of prevention and preventive measures, which is vital to keep those with sickle cell disorder safe and well. Also, it is no good having advice on managing medicines if school staff can simply refuse to administer them. Research shows that only a quarter of schools would agree to give children with sickle cell disorder mild painkillers, which is a problem for those suffering sickle cell, who need such medication if they have a crisis or an attack. We need to rewrite the guidance Managing Medicines in Schools to include sickle cell, which is the most common single genetic condition in England, affecting one in 1,850 of all births in England.

I know that the Government’s view is that the local school is best placed to know the needs of its children, but research has shown that schools are clearly not well placed to do this with sickle cell disorder and need considerable help and guidance to respond adequately. All children with medical conditions are supposed to have an individual healthcare plan, but research shows that only 43% of schools with children with sickle cell disorder even claimed to have such a plan. Checking that all schools have such plans in place for children with sickle cell disorder is essential. If such a policy is implemented it will reduce admissions of sufferers to hospital, which is an added, unnecessary strain on the NHS. Unfortunately, children suffering from sickle cell disorder do not have any provision under special educational needs; therefore I believe that a statement of special educational needs is necessary to help protect these children’s well-being at school and I look forward to hearing the Minister’s views. I hope that these children will be brought into the fold and given greater consideration.

[Baroness Young of Old Scone (Non-Afl)]

My Lords, I shall speak to Amendments 220, 221 and 222, tabled by the noble Lord, Lord Storey, and Amendment 223, tabled by the noble Lord, Lord Kennedy. I join other noble Lords in welcoming the government Amendments 241A and 274. I declare an interest as chief executive of Diabetes UK. We have been delighted and I thank the Minister and his department for the way they responded to the very real case for improved support for children in schools with health conditions, a case that was made not only by the Health Conditions in Schools Alliance but by some parents and children whom the Minister very kindly agreed to see during the summer. These laid out their personal cases in rather heart-rending fashion and demonstrated just how fundamentally the support given in school can influence not only children’s health but also their self-esteem, their educational attainment and their family’s economic circumstances if a parent has to stop working to meet the shortfalls in support that the school is failing to provide.

This is not a small-scale problem: we have heard from many noble Lords this afternoon and there are many more than a million children involved. I shall not go through all the statistics—noble Lords have heard many of them already—or even the heart-rending stories, because I think the Minister got that in bucketloads during the summer. I do, however, want to raise some practical issues that go with the Government’s amendment to lay a statutory duty on schools to provide support. We are very pleased that the amendment includes academies—that is very welcome—but the statutory duty is not enough on its own and we are very pleased that the Government are committed to backing this up with statutory guidance.

--- Later in debate ---

[Lord Nash]

I am grateful for the noble Baroness’s intervention. I shall take away all the points that have been made today and consider them further, including, I hope, understanding more clearly the point that the noble Baroness made. The Bill defines a learning difficulty or disability as significantly greater difficulty in learning than the majority of others of the same age, or a disability that prevents or hinders a child or young person from making use of facilities. This means that the majority of disabled children also have special educational needs, and we have seen from the pathfinders that they have taken a broad view of the definition in shaping their local offers and joint commissioning arrangements.

In addition to the SEN framework, there is other important legislation that protects disabled children and young people. The Equality Act 2010 makes it clear that all education providers and commissioners must make sure that reasonable adjustments are made for those with disabilities, including providing auxiliary aids and services such as specialised computer programmes, hoists and sign language interpreters. Parents can legitimately complain if education providers fail to deliver those adjustments.

Equally, in the health system there are legal protections. Section 3 of the NHS Act 2006 gives CCGs a statutory duty to provide health services to meet the reasonable needs of a child with a complex health need. Section 17 of the Children Act 1989 gives local authorities a general duty to safeguard and promote the welfare of children in need in their area. Together, therefore, the provisions in the Bill and existing legislative arrangements provide important protections and support for disabled children and their families.

Before amending the Bill, we need to understand which children might not be supported by these provisions and how changing the Bill would help them. I turn to health conditions and my amendment. A number of the amendments in this group—those tabled by the noble Lords, Lord Low, Lord Storey and Lord Kennedy, and the noble Baroness, Lady Howarth—concern children with long-term health conditions. I agree that children and young people with medical needs should not miss out on a full education simply because they have a medical condition. They should not be prevented from active participation in wider school activities that are so vital to their academic attainment and social well-being.

I have heard the evidence that suggests that current arrangements do not always work as they should. That evidence included a meeting with the noble Baroness, Lady Young, and the case made very powerfully by two young people, Beth and Max, whom she brought to see me. I find it appalling that some schools fail their pupils in such a fundamental way. While it remains the case that most schools manage this issue well, and it is important to acknowledge that, it would be wrong to ignore the instances of poor practice. Where there is poor practice, pupils can be placed at disadvantage or risk simply because they are not receiving the right support for their health needs.

Noble Lords will have heard me say on many occasions that this Government trust teachers and head teachers to run their schools and to adjust their provisions for the particular circumstances of their pupils. We believe that this applies to provisions such as PSHE and careers; all good schools should have an active programme on these matters, but they must be free to adjust to the local needs of their particular pupils. However, in the case of medical conditions, this is not a question of subjectivity. When a pupil has an epileptic seizure, there is a clear procedure that needs to be followed; it is not a question of interpretation. At certain times, a diabetic child will need more insulin or more glucose—it is as simple as that, and there is no scope for subjectivity. The same will apply to asthmatic pupils.

That is why I have tabled an amendment giving schools a new duty to make arrangements for supporting pupils with medical conditions and to have regard to statutory guidance when meeting the duty. I do not do that lightly; I am aware that many other duties could be placed on schools. However, ensuring that children who already have medical issues are not placed at further risk seems to me to be extremely important and obvious. This builds on the commitment made in the other place by my honourable friend the Minister for Children and Families to revise and reissue the managing medicines guidance for schools later this year, and I thank all noble Lords who have spoken in support of this amendment.

[Baroness Benjamin]

My Lords, will children with sickle cell disorder also be included? The Minister did not mention them in the list that he just gave.

[Lord Nash]

I reassure the noble Baroness that the amendment is not just about managing medicines but is about supporting pupils with medical conditions. We do not plan to set out a long list of particular medical conditions but I believe that we intend to cover her concerns in the regulations. I shall go on to explain how we might do that.

I am pleased to hear that news of the new duty has been warmly received by stakeholders. Unison has welcomed the guidance and what it will mean for its members. The Council for Disabled Children has said that this should ensure that the,

“needs of children with medical conditions … are fully met in school, enabling them to achieve the best possible health and education outcomes”.

Diabetes UK has described the duty as a “major step” to help to ensure that children with long-term medical conditions receive the support that they need at school. Those are just three among many stakeholders who have offered their assistance with developing the guidance, and signals strong commitment and determination to deliver guidance that will make a real difference.

The noble Baroness, Lady Howe, and others asked for assurance that we will really make this work. I have therefore asked officials to work with noble Lords who are interested, the Health Conditions in Schools Alliance and other partners, including unions, the Council for Disabled Children and the Department of Health, on the content of that guidance. I hope to be able to report on progress before Report. I note the point that the noble Lord, Lord Northbourne, made in this regard.

Early discussions have already taken place with members of the alliance and other stakeholders, focused specifically on the content of the guidance. We are fully aware of the need for the guidance to cover issues such as the role of school policies and the appropriate use of individual healthcare plans. Other key issues that we would expect to see covered in the guidance include staff training, co-operative working with healthcare and other professionals, and working with parents in the best interests of their children. In addition, we would expect that the guidance will signpost to good-practice case studies and other useful information relevant to specific medical conditions.

I assure the Committee that, in my view, advice from our stakeholders will be invaluable in ensuring that we get the content of the guidance right. Their help will be critical in enabling us to produce guidance that is accepted by schools and that is effective in helping them to support pupils with medical conditions.