Education of Children with Cerebral Palsy

Steve McCabe Excerpts

Tuesday 9th December 2014 Westminster Hall

[Steve McCabe (Birmingham, Selly Oak) (Lab)]

It is a pleasure to see you in the Chair this morning, Mr Hollobone.

Let me begin by congratulating the hon. Member for Fareham (Mr Hoban) on his role in securing this debate and on an excellent speech, which teased out some of the issues from the inquiry very well. I also congratulate his hon. Friend, the hon. Member for Blackpool North and Cleveleys (Paul Maynard), who of course has cerebral palsy himself, and who was also instrumental in requesting this debate. However, due to his other responsibilities in this quaint place, he now finds himself unable to take part in this debate.

As we have heard, children who have cerebral palsy, as with many other conditions and disabilities, are often reliant on early identification and intervention to ensure that they make progress in both their physical capabilities and their educational progress. As I have said previously, Labour will support the Minister if he wants to work to persuade his colleagues at the Department of Health that we should make it mandatory for all children who experience complications around the time of their birth to undergo early screening by specialist paediatricians and other experts for conditions such as cerebral palsy. That would be a wonderful example of the children and families legislation being used to show that the Department of Health is fully on board.

As we have also heard, identification of children from nought to two is vital. Action Cerebral Palsy has pointed out that this is the time when the brain’s development is at its most active, and we are most likely to achieve success in retraining damaged areas. It is in this very early period that children have the greatest chance of learning and adapting. Without sufficient support in the period from nought to two—what the hon. Member for Fareham referred to as the “golden years”—children are unlikely to get the specialist intervention they need, and that can set them back right at the outset.

As the hon. Gentleman said, cerebral palsy is a broad term designed to cover a range of neurological conditions that affect movement and co-ordination, and it is caused largely, we believe, by damage sustained during or shortly after birth to the part of the brain responsible for controlling muscle movement. I am told that three in every 1,000 babies are born with cerebral palsy, making it the most common motor disability in childhood. Estimates suggest there may be around 110,000 people in the UK living with the condition.

There seems to be a slightly greater likelihood of the condition affecting boys rather than girls, although as far as I am aware there is as yet no scientific explanation for this. The condition is not hereditary or genetic. Serious infections, extreme nutritional deficits in the mother’s diet or unexplained foetal complications are thought to be major factors, as we heard earlier, as is brain damage resulting from lack of oxygen during foetal development or during labour and delivery. About one in three children with the condition are unable to walk; one in four are unable to feed or dress themselves; three in 10 may also suffer from severe learning difficulties; and one in four may experience epileptic seizures. However, life expectancy is good for children who survive until at least the age of 10.

As with many other conditions, parents and support groups for those with cerebral palsy report a lack of awareness on the part of health professionals, teachers, educators and other local authority professionals they have to deal with, and they regard this as an impediment to progress for their children with cerebral palsy. In severe cases, children will need full support and therapeutic input, specialist schools and specialist equipment, but for a great many a supportive and assistive environment in a mainstream school can easily be the best option.

Since the introduction of the Children and Families Act 2014, an education health and care plan—previously, an SEN statement—may be needed to ensure that a child with cerebral palsy receives appropriate support and education, but that is not so in all circumstances. One of the greatest problems when it comes to good choices and appropriate education appears to emerge in respect of children with mild forms of the condition. This is about joined-up services, and the professionals and agencies actually listening to parents and providing appropriate assistance—all factors that the Children and Families Act was designed to address; all factors where the local offer will play a crucial role.

I listened with interest to the hon. Gentleman’s suggestions about the local offer. I, too, am concerned about how well it will help to shape services across the country. It is for that reason that my party has concluded that the local offer needs to be subject to an annual assessment that takes account of the experience of parents and supporting organisations, so that we know what is happening out there, we can identify progressive and innovative developments and the local authorities and geographic areas that are really working in the spirit of the legislation, and we can recognise what is simply not good enough. Surely that is the best way to drive up good practice and make clear what we are not willing to accept.

A criticism I hear repeatedly of existing models is that there appears to be an over-emphasis on equipment-based interventions—perhaps a throwback to a bygone age—rather than hands-on, active, sensory, motor learning for children, as well as the accompanying training for parents and practitioners. When it comes to high-needs funding, there is insufficient evidence of a child-centred approach at this early stage. There tends to be a focus on equipment funding or support workers and ancillary development, rather than a child-centred approach. That strikes me as contrary to the spirit of the legislation that the Minister is responsible for.

At present, we do not seem to have the right balance in sharing the skills that are available, so that the expertise in specialist centres, voluntary organisations, support groups, charities and independent bodies is utilised properly to help to build knowledge, skills and training in the mainstream schools and nurseries that children with cerebral palsy attend. I am keen to see access to specialist provision and expertise in cerebral palsy made available as soon as concerns are raised about a child’s development. We need to ensure that every child who is capable of benefiting from such an approach has access to educational programmes that address movement skills as education, rather than therapy.

That was what the hon. Gentleman was referring to when he talked about his experience of conductive education through the Rainbow Centre in his constituency. The National Institute of Conductive Education, which is based just down the road from my constituency in Birmingham, has pioneered similar approaches. This education should be available to all children with sensory motor disorders. Clinical and education staff, including special educational needs co-ordinators, must receive both initial and ongoing training as part of their continuous development, so that they become fully acquainted with best practice in this area.

Many years ago, Baroness Warnock advocated a policy of inclusion for children with SEN; and, on the strength of her report, many special schools were closed. However, in 2005 the Baroness admitted that the policy had gone too far, leaving a disastrous legacy. Inclusion is fine where it works, but it does not work for everyone. Elsewhere, I have spoken of Labour’s desire to see a network of hub-and-spoke models—I do not think the Minister and I are that far apart on this—so that specialist centres develop skills, expertise and training, and share these with local schools and nurseries in their locality. Surely that is the answer to the inclusion debate: not one or the other, but what is appropriate for the individual and one supporting the other.

Like many of the other high hopes contained in the Children and Families Act, a key aspect of improving the lot of children with cerebral palsy is good joint commissioning and a constant dialogue with parents to help them to shape future provision, as well as to agree on what is best for their child. I read in a briefing from Action Cerebral Palsy—the hon. Member for Fareham alluded to this—that the

“negativity about the potential of the Children’s and Families Act reform is the legacy of an adversarial SEN system, where the parents and practitioner involved have been left battle-weary and sceptical that change may be achieved.”

I recognise that sense of frustration and exhaustion, and that cynicism. I, too, have met too many parents who have had exactly that experience.

I want to make it clear that the Minister and I have in common a desire to change that history—that inevitability—about being the parent of a child with special needs. The Minister’s legislation offers a way forward, and I will work with him to ensure that the implementation translates into action and not just nice words. We have to take the opportunity and make it clear to parents that we recognise their struggle and that the purpose of the legislation is to try to change things. It is not right that they should feel exhausted by the constant battle to achieve the support and services that their children deserve as of right.

I have said this to the Minister before, but we need to consider how best to review regularly the SEN code of practice, because it will play a vital role in how well the legislation is implemented. I want to see authorities and other agencies treating children and their parents as the legislation intends. That approach should be accompanied by a small implementation team at the Department for Education. That is the only way to ensure that the aspirations of the legislation are translated into action and that the sense of negativity that Action Cerebral Palsy describes is confronted.

We need to be confident that schools are developing communication systems that at the very least ensure home-school liaison books or phone texting or e-mail systems, so that information is regularly exchanged and acted upon. Where more than one service is involved, there should be regular “Team around the child” meetings, so that all those involved work together in the best interests of the child.

Fatigue can be a factor in many disability conditions, including cerebral palsy, and parents need confidence that the school is capable of constructing the right rest/exercise balance to ensure that the child is making progress, but not being pushed beyond what is appropriate. Schools should focus on those things. Many children with cerebral palsy also suffer from memory difficulties, which puts an emphasis on well-planned lessons with knowledge in advance, so that the parent and child know what is happening in the coming year, months, weeks and days. They can then prepare and make the most of their educational opportunities. The hon. Member for Fareham referred to transition periods being essential. Whether it be into secondary school or the various other transitions, it is vital that children make a proper transfer from one setting to another and that it does not happen haphazardly. Children with cerebral palsy, like many other children with disabilities, rely on their family and a network of support, and it is vital that that is kept intact during any transition planning.

In the autumn statement, the Chancellor made reference to a number of initiatives designed to improve the law, but I noticed that there was not any specific reference to this area. Since we are so close to Christmas, is the Minister in a position to tell us whether there are any surprise presents for those with cerebral palsy? Can he bring to bear any new money in this matter? To be clear, this is not solely a money issue; it is much more about how well services work together. I am conscious of the enormous pressure on local authorities. Making progress on early identification and the better use of available services and having a local offer that is fair to everyone and a properly implemented code of practice is not resource-free. I am curious to know how the Minister will check that local authorities and other agencies have sufficient resources to accomplish the things he has said he wants to achieve.