Education of Children with Cerebral Palsy

Mark Hoban Excerpts

Tuesday 9th December 2014 Westminster Hall

[Mr Mark Hoban (Fareham) (Con)]

I thank my hon. Friend the Member for Blackpool North and Cleveleys (Paul Maynard) for securing this debate and generously asking me to open it. My first event as a Member of Parliament was a fundraising evening for the Rainbow Centre, a charity set up by parents to enable their children with cerebral palsy to benefit from conductive education, a therapy pioneered at the Peto Institute in Hungary. At that point, the Rainbow Centre was above a carpet shop in the centre of Fareham; they were not the most salubrious premises, but it demonstrated the parents’ commitment. They were prepared to go there during the week and on weekends, often carrying their children upstairs so that they could benefit from the education provided there. Children came from as far afield as Hampshire, Sussex, Dorset, Wiltshire and the Isle of Wight.

Now the Rainbow Centre is in a purpose-built building in Fareham, and can offer support to more parents and their children. It also uses the techniques of conductive education to help adults with multiple sclerosis and Parkinson’s disease and those who have had strokes. My engagement with the Rainbow Centre led me to become involved in a parliamentary inquiry supported by Action Cerebral Palsy, an umbrella organisation for charities across the country supporting children with cerebral palsy. My hon. Friend the Member for Blackpool North and Cleveleys led the inquiry, and a final report will be published next month.

I will say a little about cerebral palsy to set the context for my later remarks. It is a motor disorder caused by damage to the immature or developing brain that occurs before, during or immediately after birth. In the UK, 1,800 children a year, or about one in 400 born, develop cerebral palsy. The condition can affect those from all social backgrounds and ethnic groups. At some point very early in life, either while a baby is growing in the womb, during birth or shortly afterward, something happens to interfere with the normal development of the brain or to injure the brain tissues. That abnormal development or injury disrupts the nerve signals sent along neural pathways between the brain and the muscles, leading to problems with movement, posture and co-ordination as the child develops. This is called cerebral palsy.

As cerebral palsy is a condition of very early childhood, the implications for the developing child cannot be ignored. During the formative years, the central nervous system develops rapidly, enabling the child to learn, explore and connect with their social environment. It is during those crucial early years that the ability to learn develops. Children with cerebral palsy are hindered to varying degrees during that process as they battle to learn fundamental skills related to their symptoms. Therefore, cerebral palsy should to a significant extent be considered as a problem of learning, rather than a problem of functioning or communicating.

Early identification of cerebral palsy and early intervention can help tackle problems of movement, posture and co-ordination. Between the ages of nought and two, a child has a high degree of neural plasticity, which can be harnessed with appropriate programmes in order to remap the neural pathways between brain and muscle, enabling children to overcome problems of movement, posture and communication.

I have seen for myself the huge progress that children have made at the Rainbow Centre through early intervention. Children whose parents were told that they would not walk now can; children said to have high degrees of dependency are now independent. Everyone who has been to the Rainbow Centre or similar centres around the country comes away moved by the sight of children, parents and educators working together through an educational programme that helps children improve their motor skills and rebuild those neural pathways. We can make adaptations to accommodate the physical symptoms of cerebral palsy—for example, we can provide ramps for wheelchairs—but it is so much more powerful and rewarding to work with children to rebuild their neural pathways so that those ramps are not needed.

There were several recurring themes in the inquiry, including problems with early identification. Also, once CP has been identified, parents are more likely to have to fight to get the right support for their children than to find it easy to obtain. There is poor signposting to centres offering appropriate programmes, a reluctance among some local authorities—including Hampshire county council—to support the work of specialist providers, and reduced access to specialist services as children get older. In many respects, those issues are not unique to cerebral palsy, and I commend the Government for their reforms relating to special educational needs and disability.

Those giving evidence in our inquiry warmly welcomed the intentions behind the Government’s reforms, which are widely believed to have the potential—I emphasise the word “potential”—to transform the lives of people with cerebral palsy. The introduction of education, health and care plans, which will provide statutory protection, comparable to that provided by statements of special educational needs, to young people who are in education or training up to the age of 25—as compared with 16 now—was seen as a particularly encouraging development by respondents to the inquiry. If services for children and young people with cerebral palsy are to complement each other, the plans should facilitate that by ensuring that services are jointly commissioned and provision is decided in dialogue with parents.

The stipulation that provision in plans is set on the basis of the expected outcomes for the child or young person, as agreed between professionals and parents, has been welcomed. It is believed that if the measures are followed through on, they should create the promised cultural shift that will lead to assessments for special educational provision being based on a continuing assessment of a child’s needs and expected progress, rather than being simply a fight over short-term solutions to long-term issues.

I want to emphasise some particular concerns of parents and other participants in the inquiry. The first regards the local offer, which is hugely important because of its potential to give families access to specialist cerebral palsy services offered by third-sector organisations. However, the challenge is what will be included in the local offer. Let me illustrate that challenge with reference to the Rainbow Centre. The centre has applied to be included in the offer for Hampshire, Portsmouth and Southampton, but councils in other areas served by the centre, such as Wiltshire and Dorset, have said that they will only include the centre if there is space available. That means that parents of children with CP in those areas will not know that the provision is available and will miss out on the support that the centre offers, and therefore on an education that could transform their children’s lives. Given the nature of centres dealing with CP, there will not be one in every county or unitary authority, so it is important that the local offer looks beyond council and area boundaries to ensure that all children with CP are signposted towards the right specialist services for them.

The issue of the local offer speaks to a broader point about the tension between tailoring services to local needs and a postcode lottery that results from a lack of national consistency. I suggest to my hon. Friend the Minister that Ofsted, in its inspection of children’s services, should examine the local offer and how comprehensive it is. Best practice guidelines should be produced for education and health professionals who work with children and young people with cerebral palsy, to accompany the special educational needs and disability code of practice. The guidelines should explain how the lives of children with cerebral palsy can be improved within the framework of the new system. Although there are the best intentions behind the reforms, parents and practitioners told the inquiry that many years of battling with education and health authorities over support for children with cerebral palsy have left them doubtful as to whether the reforms will make a difference.

The negativity about the reforms’ potential is the legacy of an adversarial SEND system in which parents and practitioners have been left battle-weary and sceptical that change can be achieved. There remains the fear that while the reforms could slightly improve the situation for children and young people with cerebral palsy, they will not address the widespread lack of understanding of the needs of those children and young people, which contributes to a systemic antagonism whereby parents have to fight too hard to prove what support their children need.

Perhaps one of the biggest recurring issues that emerged from the inquiry was the striking lack of awareness among health and education professionals, even among those responsible for carrying out assessments for SEN statements, or for making plans about cerebral palsy that establish what support children and young people who have CP require. This results in late diagnosis, missed opportunities for early intervention and a general scepticism from professionals about forms of support that parents often say have transformed their children’s lives.

There is a need for an awareness-raising exercise, so that if cerebral palsy is diagnosed, parents are made aware by professionals of the options available to them immediately, rather than having to search for those options themselves. In addition, parents who spoke to the inquiry said that all too often they themselves were the experts on cerebral palsy, and the professionals they encountered not only provided little help but acted as obstacles to parents and their children, preventing them from accessing the best help available.

There is a particular concern about early intervention and about whether the reforms will do enough to help. The inquiry shows why more needs to be done to support children and young people with cerebral palsy, especially in the “golden years”—post-diagnosis, for those under the age of two—when intervention is at its most effective because of the plasticity in children’s brains at that age. However, this is often also the period when that type of intervention is most absent.

The inquiry found that children are not receiving the specialist invention they need during these golden years because there is not enough specialist educational intervention available for children under the age of two and, where it does exist, health professionals and parents are too often completely unaware of it. Moreover, even when they are aware of it, local authorities’ responsibilities for assessing the needs of those under the age of two are not spelled out very clearly in the SEND code of practice. That means that by the time an assessment is made and support is put in place, there is a risk that the opportunity to intervene in these golden years, and to improve significantly the early intervention services for children with complex needs, such as cerebral palsy, has been missed. More clarity is needed in the SEND code of practice. It is not clear how local authorities are involved in the assessment of children’s needs prior to the check at the age of two. Of course, as I have said, for many children, intervention after the age of two is of reduced effectiveness.

I would be keen to hear from the Minister how the Government intend to encourage local authorities to target early intervention, and how health and education services will be encouraged to work together in early years—for example, by ensuring that the requirement on health professionals to advise parents on not only the health support available to their child but the educational and developmental support that they may be able to access is followed through on.

I have discussed problems to do with the availability and quality of care for children with cerebral palsy in their earlier years, but we should not fool ourselves into thinking that if we tackle these problems, they will be solved. It is clear from my conversations with parents, and from feedback from centres across the country, that far too many children with cerebral palsy can be isolated when they reach secondary school. Primary schools are often well prepared. Staff are able to work with children who have cerebral palsy, primarily because these schools are often laid out on one floor and are therefore very accessible. Children with CP can get around such schools without any issues, and they can take part in all the normal school activities. However, when they get to secondary school, they can often fall through the gap.

By their nature, secondary schools have much larger buildings than primary schools, with multiple floors and large complexes. Children with CP can often struggle to get around them, leaving them isolated from their classmates and often from parts of the curriculum. Children with CP have been unable to take subjects they love because of problems with wheelchair access. Those problems may prevent them from taking part in courses on the first floor of a building that does not offer access through lifts or ramps.

However, the problem runs much deeper than just physical access. Many secondary schools do not have the specialist knowledge to help children with CP to integrate, and that problem is compounded by the nature of CP. During their adolescent years, young people with the condition can physically regress if they are unable to continue the programmes that help them to remap and maintain their neural pathways. Ensuring proper integration between schools—both primary and secondary—and specialist services can make a huge difference. We do not want the advances in independence that are made in early years to be eroded because insufficient thought has gone into the primary and secondary education of a child with CP.

In conclusion, I hope that I have set out where I believe the debate is at regarding support for children with CP, based on my experience with the Rainbow Centre and my participation with the parliamentary inquiry that is supported by Action Cerebral Palsy. As I said, that report will be published next month, and I hope that the Minister will meet my hon. Friend the Member for Blackpool North and Cleveleys and me, as well as representatives of Action Cerebral Palsy, to discuss it and find a way ahead, so that the Government can help to implement its recommendations and we can improve the lives of children with CP and their families.

If I think back on the remarks I have made, I must admit that my views are perhaps coloured by my experience of meeting parents of children with CP. They have often had to fight hard to get the help their children deserve and that can enable their children to lead more independent lives than was perhaps imagined when their condition was first diagnosed. These are difficult battles to fight, so parents welcome the Government’s reforms, which should enable their children to get the early intervention they need. However, because parents are battle-hardened, they are also sceptical. They want an end to the adversarial approach to educating their children; early intervention in practice, and not just in theory; and consistency in the local offer, so that every child with CP has access to specialist education, regardless of who provides it and where they live. These parents have clearly set the bar for success, and it may be high in comparison with what they have experienced, but the Government need to prove to them that these reforms mean that they no longer have to fight for the right education and health support for children with cerebral palsy.

[Mr Philip Hollobone (in the Chair)]

As this is an Adjournment debate nominated by the Backbench Business Committee, we will hear from the hon. Gentleman again at the close of the debate, because he is entitled to two or three minutes in which to wind up; this is one of those occasions when the Minister will not have the last word.

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

As ever, it is a pleasure to serve under your chairmanship, Mr Hollobone. It is also good to know that I will not have the last word, which I am sure is a relief to everyone who has taken part in the debate. I congratulate my hon. Friend the Member for Fareham (Mr Hoban) on securing this debate by proxy, if that is the right way to put it. Most importantly, he has brought to the attention of the House support for children with cerebral palsy, borne from his experience of going to the Rainbow Centre in Fareham, of which he is clearly a vocal and passionate champion. He was instrumental, along with my hon. Friend the Member for Blackpool North and Cleveleys (Paul Maynard), in establishing the recent parliamentary inquiry into cerebral palsy, to which officials from the Department for Education and the Department of Health gave evidence. We look forward to seeing the final report in the new year.

At this juncture, I will say a little more about the contribution of my hon. Friend the Member for Blackpool North and Cleveleys. First, having led the debate in the House for many years on how we better support children and young people with cerebral palsy with such expertise, candour and aplomb, he has, through being too good at that role, been recognised for his efforts, as well as his wider knowledge and skills. He now sits behind me as a valued Parliamentary Private Secretary in the Department for Education. He is therefore unable to speak in the debate, although I know he is champing at the bit to do so. Secondly, and more importantly, it is only thanks to his tenacity, passion and leadership that we are having the debate at all. I put on record my own appreciation, along with that of my hon. Friend the Member for Fareham and many others in Blackpool and beyond, for his continued efforts in raising awareness of cerebral palsy and challenging us all to think hard about what more we can do to support children and families living with CP.

The Government’s ambitions for disabled children and those with SEN, including those with cerebral palsy, are the same as for all other children: for them to achieve well in their early years, in school and in college; to find employment; to lead happy and fulfilled lives; and to have more choice and control over how they are supported. The reforms introduced by the Children and Families Act 2014, which came into effect in September, should work to the benefit of all children and young people, regardless of their type of need or impairment. We want to ensure that the reforms work well for all children and young people with cerebral palsy. We are keen to build our understanding of the evidence on what works, and we will be more than pleased to work with many of the excellent organisations out there with expertise in the area, including Action CP. Our national voluntary and community sector grants programme is another opportunity for us to support good proposals, including on early intervention and identification. I know that Action CP has submitted such proposals to us in its bid through that programme.

Our special educational needs reforms and early years policies are designed to improve how we identify and support children and young people with special educational needs. Getting the right start in life is so important for all children, but particularly for those who are disabled or have SEN. My hon. Friend the Member for Fareham is absolutely right that early identification and intervention for children with cerebral palsy is crucial if we are to put in place the right support at the earliest possible opportunity to help mitigate its physical, emotional and educational impact and ensure that we allow them to reach their potential.

A number of measures are in place to identify children’s needs as early as possible, including those with cerebral palsy. The key principle is that assessments have to be focused on the needs of the individual child and their particular circumstances. When they are between two and three years old, all children are offered a healthy child programme review, which is carried out by a health professional. That is a snapshot assessment on a given day looking at health and development outcomes. Where the child is in registered early years provision, the education practitioner, who is usually the child’s key worker, must carry out a progress check when a child is aged between two and three, and provide parents and/or carers with a short written summary of the child’s development in prime areas. I am also conscious that the golden years, as my hon. Friend the Member for Fareham puts it, fall before the age of two. We must carefully consider what more we can do to establish as early as possible whether cerebral palsy is playing a part in a young baby or toddler’s life and to put in place support that will have a discernable, positive effect on their future development.

The hon. Member for Birmingham, Selly Oak (Steve McCabe) mentioned some of the specific screening protocols for children who experience complications at birth, and I will pass on his views to my colleagues in the Department of Health. Decisions about conducting specific early screening protocols for conditions such as cerebral palsy are quite rightly made by specialist clinicians. Diagnosing cerebral palsy often takes time and no test confirms it or rules it out. In some cases when a baby requires special care in hospital after being born, it may be possible for a confident diagnosis to be made relatively quickly, which is good in order to ensure a quick response. In many cases, however, a clear diagnosis is possible only after a few months or years of screening. For those with milder symptoms, a diagnosis may not be rendered until the brain is fully developed at three to five years of age.

Under the healthy child programme, babies undergo screening, health checks or immunisations at birth, 72 hours, five to eight days, six to eight weeks, 12 weeks, 16 weeks, six to eight months, 12 months, two and a half years and at school entry. Each of those routine contacts with a health professional enables parents to discuss any concerns. They can then contact their health visitor or GP at any time should they have such a concern about their child’s development. As technology and science advance, we want to continue to push the boundaries of what is possible to ensure that we get that confident diagnosis at the earliest possible time. I am happy to work with my colleagues in the Department of Health to establish whether the national health service is doing all that is possible.

If significant concerns emerge or if a special educational need or disability is identified, practitioners should develop a targeted plan to support the child’s future learning and development, involving other professionals as appropriate. In doing so, to pick up on a point made by my hon. Friend the Member for Fareham and reinforced by the hon. Member for Birmingham, Selly Oak, it is right that as much understanding as possible is in place as to what learning is and how it can manifest itself in each individual child’s circumstances, so that no opportunity is lost to develop every aspect of their potential.

As my hon. Friend the Member for Fareham set out, the first few years of a child’s life are fundamentally important. They shape their future development and influence how well they do at school, their health and well-being and their achievements later in life. We fully recognise that, which is why, since September 2010, every three and four-year-old has been entitled to 570 hours a year of Government-funded early education over no fewer than 38 weeks of the year. Since September 2013, the most disadvantaged two-year-olds across England have been able to access a funded early learning place. By May 2014, more than 116,000 two-year-olds were already benefiting from early learning. That number has continued to grow since September 2014, when the number of children entitled to a place doubled to some 260,000.

Through the early years foundation stage, we seek to ensure quality and consistency in all early years settings, so that every child makes good progress, that no child gets left behind and that learning and development opportunities are planned around each child’s needs and interests. That is also at the heart of the reforms in moving towards to a birth to 25 single plan and assessment system to ensure consistency of approach from all professionals who come into contact with a child throughout their education. The EYFS currently calls for integrated working between health and education practitioners to assess a child’s development and needs at age two where possible, which is particularly important for children with cerebral palsy. We have asked for integrated reviews to be offered as standard practice from September 2015.

As ever, there are some excellent examples of effective integration of education, health and care services. I can point to ones in Cornwall and Wolverhampton that we have discovered through engagement with the relevant authorities, but we need to ensure a consistent approach to integrated working across health and education not only through legislation, but in practice on the ground. To follow that through, Ofsted will look for evidence of integrated working in all settings, from early years through to the compulsory school age, to seek assurances that early years providers and others are assessing children’s progress and needs appropriately and are doing all that they can to support each child’s development towards being ready for school and beyond.

A more holistic picture of a child’s needs is more likely to lead to the child getting the help that they need through early intervention. Supporting more timely and more accurate early intervention might be more effective, could lead to longer-term savings and could improve children’s life chances, especially those from disadvantaged backgrounds. That is why, for children of school age and beyond, we have ensured that the new special educational needs code of practice gives clear advice on identifying needs and providing support, based on effective practice from successful schools, including those in the achievement for all programme.

My hon. Friend the Member for Fareham welcomed the emphasis that the reforms rightly place on educational and life outcomes, both in early years settings, schools and colleges, and, for those with more complex needs, through co-ordinated assessment and a single education, health and care plan. As the hon. Member for Birmingham, Selly Oak reminded us, health bodies and local authorities now jointly plan and commission services for disabled children and young people and those with special educational needs. I have worked closely with my colleagues in the Department of Health throughout the development and implementation of the reforms, and will continue to do so, to ensure that health is an integral part of the drive to improve outcomes for children and young people, but where we could and should go further, we will look to do that. I had an extremely productive meeting with the Under-Secretary of State for Health, my hon. Friend the Member for Central Suffolk and North Ipswich (Dr Poulter), and we have a clear and joint commitment to ensure that the work being done throughout the national health service to implement the reforms is as much a priority in the NHS as it is in education and social care agencies.

Better information for parents and young people has been a theme throughout the development of the reforms. There should also be an opportunity for them to feed back, so that improvements can be made that reflect their observations of where services may be falling short. Through the local offer, parents will know what they can reasonably expect their local early years provision, school, college, local authority and local services to provide without having to battle for the information, which was so disparately spread in the past. From his observations about the Rainbow Centre in his constituency, my hon. Friend the Member for Fareham made the point well that the local offer in his local authority area makes it clear that the centre is available to parents, but that that is not reflected in the surrounding local authorities, which do not necessarily see it as a part of their own offer.

We made it clear throughout the passage of the legislation—I am happy to reiterate it now—that a local offer is not confined to services within a local authority area, in particular when it relates to specialist services. We tend to operate within what many would see as artificial boundaries, but many parents need to look beyond their local authority to find the service that best meets their children’s needs. Local authorities should therefore be thinking long and hard about services not only within their own local authority, but in surrounding areas, so that the local offer genuinely reflects what they would reasonably expect to be made available to parents for all conditions and for all children who have special educational needs and disabilities. Local authorities must consult parents of children with SEN and disabilities, and children and young people themselves, when developing and reviewing their local offer and must publish the action that they will take in response to comments about it. That will help to ensure that local services are responsive to local needs and will make it even more important that the offer reflects what parents say is required.

[Mr Hoban]

I appreciate that I will have a second bite of the cherry in a minute, but I just want to press the Minister on this point about what the local offer includes. He rightly places emphasis on consulting parents, but if the parents do not know that there is a specialist centre in the next county, or the next city in the case of Birmingham, they will not know how to feed that back. What steps will the Department take, either directly or through Ofsted, to monitor the composition of local offers?

[Mr Timpson]

I was going to come on to the issue of accountability, but will bring it forward in my contribution as my hon. Friend has raised it. The hon. Member for Birmingham, Selly Oak also made the point about how to ensure that implementation is taking place on the ground. A real difference for families would be if they had a different experience and a more coherent and cohesive response from each agency, involving them more in the process. That involves ensuring that the local offer sets out clearly for parents what the local authorities expect to make available. The regulations that underpin the Children and Families Act—not only the code of practice, but other delegated legislation—make it clear what local authorities should be doing to achieve just that.

In the early stages of implementation, we brought a network of SEN advisers into the Department to work with us, and they are out in the field the whole time, establishing with all 150-plus local authorities that they have complied with the legal requirements of the Act in the publication of the local offer—every single local authority has a published local offer—and that the offer reflects the spirit of the reforms. The SEN advisers have been working in the system for many years—they were hand-picked for that reason—and their knowledge means that they can establish where there is a shortfall in the local offer and in the information available.

Beyond the first year of implementation, we have been working closely with Ofsted. We have asked it to conduct a survey on local authority readiness for the reforms and whether there is a need for an inspection framework, so that parents may have confidence that education, health and social care services are genuinely working together with parents, families and children at the earliest possible opportunity, involving them not only in the development of their own plan, for their own child, but in the wider strategic plan for provision in the local area.

We will announce soon how the accountability framework will be shaped in future, but the Christmas present that I can offer to parents and families at this time of year is that we are clear with Ofsted about the need for a clear level of accountability that does not involve a direct relationship with the Department, instead relying on a local approach to accountability, which will help to provide consistency throughout the country. I hope that that will be a welcome development for many parents who were anxious to know how we intend to ensure that the reforms that we have set out and our vision will be translated into action on the ground.

The need to raise awareness among professionals is a key aspect of our reforms, as is the sufficiency of education and health care specialists with the skills to support children, including those with cerebral palsy, a point made by both my hon. Friend the Member for Fareham and the hon. Member for Birmingham, Selly Oak. Transition points can often be a stage in a child’s life where support can fall away, causing a period of uncertainty and or decisions to be delayed. That is the whole reason why we have moved towards a clear birth-to-25 system, for a much easier way to transcend movement through the education system that does not include different plans and different people, but gives parents and children consistency of support through what can be a difficult time.

The Government have established a clear, national statutory framework for identifying, assessing and providing for all children with SEN and disabilities. Detailed arrangements are, rightly, made locally, allowing local provision to be more responsive to local need, but the needs of children and young people with SEN vary greatly. Indeed, the needs of those with cerebral palsy can vary greatly, as we have heard, depending on the precise nature of the condition and other factors in their life. Education settings therefore need to ensure that they give their staff the training necessary to support the individual needs of the children and young people for whom they provide.

Early years providers, schools and colleges are responsible for deciding what specialist expertise is required to meet children and young people’s needs and for securing that expertise. That is explicit in the SEN code of practice. We have been at pains to drive the point home that it is the responsibility of all teachers within a school or an educational setting to have an understanding and awareness of special educational needs and disabilities, so that they can play their part and not see it simply as the role of the SEN co-ordinator or other specialists. Specialist organisations can play a key role in increasing awareness of particular disabilities. My Department has supported such organisations in the fields of autism, dyslexia, and speech, language and communication needs, which are the most prevalent types of SEN, to provide information, advice and support to schools, early years settings and local agencies.

The new SEN and disability code of practice makes it clear that local authority and health partners should ensure that a designated medical officer is in place to ensure that assessment planning and health support are carried out. I am interested in securing the further spread of DMOs. There are some excellent examples of where they are making a significant contribution, but there is still scope for them to become more embedded in more parts of the country. I will be looking at that closely in the coming weeks and months. The code recognises that the DMO role would usually be taken by a paediatrician. The person appointed should have appropriate expertise and links with other professionals. That helps to bind health in, not only with the clinical role of the DMOs but with the role that they can play within schools, so that there is a genuine partnership to ensure that assessment, planning, and implementation and review of the plan are done as a collective response to the child’s needs.

The Children and Families Act places the views, wishes, feelings and aspirations of children, parents and young people at the heart of the new system. That is what the Green Paper set out in 2011 and what we have seen through to the conclusion of the legislation. To make it happen we have an active young people’s national advisory group, EPIC, who have been involved in the development of the reforms from the start, and they are still with us. I meet the group regularly and I find their involvement hugely valuable. They share with me their real-life experiences, not only of the consequences when they get suitable, solid and constant support, but of when the system fails to deliver and the fallout that occurs. Such input has helped us to focus on the practical implications of our reforms and led to some important and significant changes. Several of the young people involved in the EPIC group have cerebral palsy and have proved to be some of our most articulate and persuasive ambassadors.

We are also doing a lot to improve advice and support for parents, including funding, through our reform partner, the Council for Disabled Children, and the recruitment and training of independent supporters in every local authority. When we asked parents what, under the old system, would make the biggest difference to them in battling it and in trying to get some of the basic provision necessary to getting on, they suggested independent supporters. Parents said that they would value some independent support from someone who was not from the local authority or the health service, but had expertise in SEN and disabilities, in particular in the areas most relevant to their own child. Independent supporters will provide advice and support for parents of children with SEN and for young people with SEN through the statutory assessment and the education, health and care plan—or EHCP—processes. Such supporters will help to build the resilience of families and to tailor support to their individual needs.

We are also providing funds for SEN and disability parent carer forums in each local authority. Forums play a central role in helping to shape local policies and provision and they have been effective in co-producing local authorities’ local offers. From their knowledge of the services available in the surrounding area, they have helped to draw out some of the gaps in some local authority offers. We wanted to continue supporting them in that, for the good reasons set out by my hon. Friend. I am sure that parents of children with cerebral palsy will want to be active in those forums, if they are not already, and I would certainly encourage their involvement.

The reforms we have set in train are still at the early stages of implementation. We have set out a transition of about three and a half years from the old system to the new. Throughout that period, however, our knowledge should not remain static, and we remain open to the suggestions, views and concerns of parents and those working in the SEN system to make sure that the work we are doing to bring about a change in culture across that system takes hold in the way we envisaged.

In that endeavour, the work my hon. Friend has undertaken in this parliamentary inquiry, together with my hon. Friend the Member for Blackpool North and Cleveleys, who is ably assisting me this morning, is most welcome. I hope—indeed, I am sure—they will continue their work in their constituencies and in Parliament. I look forward to seeing their final recommendations in the inquiry’s report in the new year.

I am more than happy to meet my hon. Friends and representatives from Action Cerebral Palsy to see what more we can do to support children with cerebral palsy and their families. There is growing awareness of the issue, but still far too little. Although we are all exercised by the many points that have been raised in the debate, it is incumbent on us all to make sure that understanding and awareness are much more widespread.

I thank my hon. Friend the Member for Fareham and the hon. Member for Birmingham, Selly Oak for their helpful, insightful contributions. If there is anything I have not covered, I will, in the usual way, endeavour to write to them to provide them with further details. The debate has been helpful in setting out some of the challenges that still lie ahead and the progress that has been made, although we recognise that there is still work to do.

[Mr Hoban]

It is a surprise and a pleasure to be asked to wind up the debate; I was not quite prepared for that when I came here this morning. The contributions by my hon. Friend the Minister and the hon. Member for Birmingham, Selly Oak (Steve McCabe) are welcome. Given the time we have had available, they extended beyond the normal 10 minutes, which was hugely helpful in exploring some of the issues that children with CP face.

Despite having been involved with the Rainbow Centre for 13 years, I have learned so much from taking part in the inquiry, and it is a real tribute to my hon. Friend the Member for Blackpool North and Cleveleys (Paul Maynard) that he led the process. The inquiry demonstrated some of the complexities and challenges involved in helping children with CP, and that came out of today’s contributions in different ways.

The Minister and the shadow Minister talked about the golden years, and integrating health and education is pivotal. We heard from witnesses about some of the challenges involved in identification. We can help to identify children at a much earlier age, but there are barriers to that, and the more we can do on early identification, the easier it is to make a difference to children’s lives. In terms of the inquiry, we will want to talk with not only my hon. Friend the Minister but the Department of Health about those early years to ensure the right processes are in place.

Two big points came out of the debate. One is about integration, not only of health and education, but of the state and the private sector, or the state and the voluntary sector and charities. How can we maximise the resources that are available? One thing that strikes me is that we are in danger of operating in silos, to the detriment of children with cerebral palsy. There are great specialist services out there that are accessible, particularly in the early years, and a lot of centres are registered with Ofsted, are respected and benefit from Government funding. However, as a child grows up, the services seem almost to be teased apart. It is harder for a child at primary school to have time in their curriculum to go to a specialist centre to continue an educational programme that helps them with their motor skills, and the pressures become greater as children progress through the education system.

The more ways we can find for specialist support and mainstream schools to work together, the greater the advantages for the children and for society as a whole. We therefore need to make sure integration works, and that we see that through as part of the Government’s reforms, and it is clear from listening to the Minister what emphasis he places on the importance of successful integration.

The second point is about accountability. Accountability is important, because it is where the system will stand or fall. I am not often critical of the Government; as the Minister knows, I am a loyal supporter. His intentions are fantastic, and I know how committed he is on this issue, but we need to make sure that his intentions are followed through on the ground, and that local authorities and local health services respond, following not only the letter of the law, but the spirit of the reforms he has introduced. A lot of people will be looking carefully at the framework Ofsted will publish, to see how we can manage local accountability and national consistency. The framework should be a powerful tool to support parents, who, at the moment, feel they are working through an adversarial system.

The implementation of the reforms and the role of Ofsted are vital, but we must do everything we can to ensure proper integration between specialist services, education and health to improve the life chances of children born with cerebral palsy. There is much we need to learn about what causes cerebral palsy and about the best interventions, but I am confident that, by working together, we will improve the quality of children’s lives enormously, which will be a real testament to the success of the Government’s reforms.

[Mr Philip Hollobone (in the Chair)]

I thank all Members who have taken part in this important debate.