Children with Epilepsy (Children and Families Act 2014)

Edward Timpson Excerpts

Monday 9th June 2014 Commons Chamber

[The Parliamentary Under-Secretary of State for Education (Mr Edward Timpson)]

May I begin in the traditional and in this case very pertinent way, by congratulating my hon. Friend the Member for Blackpool North and Cleveleys (Paul Maynard) for once again initiating an important debate about the wide subject of special educational needs and the specific area of those many children and young people who have some form of epilepsy? This is not the first debate of this kind that we have had, and it is good that he reminds us that as we move on from the statute book to the implementation of the Children and Families Act 2014, we should keep our focus very much on what this means to the families and children whom we hope to benefit from the reforms.

Like my hon. Friend, I understand the importance of supporting pupils with medical conditions such as epilepsy, and it is imperative that the right support is put in place quickly and effectively. I will try to cover as many of the points that he made as possible, and I will of course endeavour to make sure he has a full and proper response in writing to those that I do not.

I should like to start by restating our ambition that every child with SEN, or who has a disability or a medical condition that impedes their ability to learn, including those with epilepsy, receives the support they need, so they can achieve well in school and go on to find employment and lead happy and fulfilled lives. The special needs reforms in the 2014 Act are deliberately focused on joining up help across education, health and social care, so that children receive the help that they need when they need it throughout their education. Parents and children will be involved in decisions about the support they receive much more closely than hitherto, so that they have a genuine say in what they want to achieve and how they will achieve it.

Epilepsy is just one of the many medical conditions for which pupils require support, to help them progress properly through school, and it is right to acknowledge the excellent work that most of our schools do to provide the support that their pupils need. However, there can be no excuse for the poor practice that evidence suggests exists in some schools.

Under the Equality Act 2010, schools have clear duties not to directly or indirectly discriminate against children and young people with disabilities. Government guidance on the Act clearly identifies long-term health conditions, such as epilepsy, as being among the impairments from which a disability can arise, and they are therefore covered by this duty. As such, this form of discrimination is simply not acceptable.

As my hon. Friend skilfully argued, however, pupils with epilepsy often face significant challenges and difficulties not just in school, but in all aspects of their lives, and I also recognise that these challenges can be exacerbated because of a lack of understanding of the condition by others.

I remember a family holiday from about 30 years ago when we had with us a school friend of my sister who had epilepsy, unbeknown to me. During our holiday, this child, who sadly and tragically died this year, suffered an epileptic fit. As a young boy, I was shocked by what I saw happen in front of my eyes, but, having had had it explained to me, it has left me in good stead for the rest of my life, in terms of understanding the cause, effect and manifestation of epilepsy and the surrounding context for someone who has it. That was pure chance, and many people, whether pupils or even teachers at school, do not have that experience and cannot draw from it.

As my hon. Friend said, that is one reason why we introduced a new duty for school governing bodies to make arrangements to support pupils with medical conditions and to have regard to guidance, so that they get the support they need at their time of need. Our aim in putting that duty in the 2014 Act was to send out a clear message that poor practice will not be tolerated and that conditions such as epilepsy must be properly recognised. Pupils with medical conditions deserve to be supported properly in schools and to have the same chances as everyone else to succeed in whatever they choose to do.

The new statutory guidance on supporting pupils with medical conditions acknowledges the negative social and emotional implications associated with medical conditions such as epilepsy. That is why there is a clear expectation for a child’s social and emotional needs to be taken into account when considering the support that they require. This guidance, which comes into force in September, is deliberately child-focused, recognising that medical conditions will present differently in different children. Epilepsy is a case in point; no two children with epilepsy will have identical needs, and it is therefore right, as my hon. Friend said, that each case is treated individually, based on the needs of each child.

That is why we have also made it clear in the guidance that the school’s policy should cover the role of individual health care plans and clearly state who is responsible for their development. The plans will help to ensure that school staff know how to support pupils in lessons, how to help them with administering medication and what to do in an emergency. They will be drawn up in collaboration between the school, the parents and the pupil—that is important—and the most relevant health care professional, such as the epilepsy specialist nurse. I am pleased that we have developed the new statutory guidance in such close collaboration with a wide range of interested parties. Young Epilepsy, as a member of the Health Conditions in Schools Alliance, was actively involved in that work and added substantial value to the guidance, for which we are extremely grateful.

In identifying children and young people who need additional support and adjustments, whether because they have a health condition, a disability or special educational needs, the key is that professionals should look at the particular needs of the individual and seek to co-ordinate support, so all these needs are addressed coherently. Children with epilepsy will not necessarily have SEN. What is set out in a child’s individual health care plan might be enough to ensure that he or she has access to differentiated, high-quality teaching. However, where a child has SEN, the new nought-to-25 SEND—special educational needs and disability—code of practice sets out how schools should work with parents to identify underlying issues, including health needs, and reflect those in the support given and the outcomes we all want to see achieved. Where a child or young person has an education, health and care plan, the code sets out a thorough process—again, with parents centrally involved—for putting in place a comprehensive plan covering the full range of a child’s needs; obviously, that can include support provided by specialist services.

These plans are also supported by the strategic arrangements in the 2014 Act. The joint commissioning duties require education, care and health services to come together to commission services for children and young people with SEN and disabilities. Wider provision is also covered, including through a consideration of how to integrate education, health and care provision to provide that most effectively, in line with wider duties. As my hon. Friend will also be aware, the new local offer will set out details of all the services for children and young people with SEN and disabilities in a local authority area and how to access them. We expect that that will reflect the full range of services, including those for children and young people with epilepsy, and those offered by the voluntary and community sector.

On initial teacher training, I fully understand the case my hon. Friend makes, and it is always tempting to look to ITT as a solution in respect of the desire to see every teacher well versed in the practice of dealing with many of these conditions. Teaching standards include duties on schools to ensure that their staff understand how to deal with children’s special educational needs. We can also look at reviews into initial teacher training to satisfy ourselves that they are going far enough.

My hon. Friend will know that there have been a number of evaluations of pathfinders in 31 local authority areas. We now have pathfinder champions who are helping those non-pathfinder areas to learn from the evaluation of the progress that they have made. We have excellent examples of families who feel that the culture has shifted. For the first time, they have been able to sit in a room with someone from education, someone from health and someone from social care, and they have been asked what they think should happen, rather than it being told to them.

The special educational needs reform grant of £70 million has gone to local authorities. We have done a local authority readiness test to see how each local authority is performing in preparation for the changes in September. Ofsted is doing some thematic work to look at how some of the reforms will bed in over the next months and years, and I hope to see progress in time towards a more cohesive inspection regime of special educational need provision across all the different services. Ofsted is starting to consider that that is the best way forward for children’s services, and there is a good case for looking more carefully at how education, health and social care inspection can be brought together, so that it looks at the experience of the child and the family, rather than at the individual services.

The independent supporters are, in many ways, the key workers about whom my hon. Friend was talking. The £30 million will pay for 1,800 independent supporters who will be drawn predominantly from the charitable sector. I encourage organisations such as Young Epilepsy, which want to get involved, to contact the Council for Disabled Children, which is helping us to recruit those independent supporters. It works out at about 12 in each local authority area. We know from speaking to parents right across the country that one of the things that they value more than anything else is to have someone who is not from the local authority, the school or one of the health providers to provide them with that genuine independent support to navigate them through what can sometimes be seen as a very convoluted system—a system that we are trying to make clearer and easier to access. It is very much an investment in service delivery, as my hon. Friend says, and the £30 million will be invested over the next two years. To monitor its progress, we will work closely with our strategic partner, the Council for Disabled Children, to make sure that it is having the impact that we all want to see.

Over and above that, I will be saying more tomorrow about how we will ensure that the extra burdens that we are placing on local authorities will be met, so that the authorities have sufficient funds to ensure that the system really does reach the parts that we want it to. Ultimately, this is about ensuring that parents and young people who have special educational needs and disabilities see that cultural change in the system that for too long has been absent. As my hon. Friend says, this is a fork in the road, and we need to take the right path. I believe that we can do that, but we need to pull together to make sure that this really does make the difference that we all want to see.

Question put and agreed to.