Finding support for children with Cerebral Palsy

Portrait of young mother who sitting on bench outdoor and keeping on the laps beautiful daughter who is invalid and mother keeping cup of drink in hand

Input from local authorities can be of paramount importance for children
with CP, write Jane Weakley and Arti Shah.

In her inquiry report in 2015, which focused on enabling the full potential of children with cerebral palsy (CP), the former Education Secretary Nicky Morgan highlighted a lack of understanding of CP and the impact it has on individuals and their families among general health and education professionals.

According to the report, around 30,000 children in the UK live with CP, making it the most common form of childhood disability. Major UK charity estimates that around 1 in 400 babies in the UK are born with a form of cerebral palsy, totalling roughly 1,700 new cases of CP in children each year.

The input from local authorities for parents raising a child with CP is absolutely vital, not least in securing an accurate EHCP (Education, Health and Care Plan) to assess and implement the appropriate level of SEN support that will help a child achieve their best possible life. This can include individual support in specialist or mainstream schools, tailored therapies such as speech-, language- and hydrotherapy and dietary advice. Recommending levels of appropriate support depends on fully understanding the nuances and presentations of CP in each  case. This understanding is sometimes lacking, as highlighted by the above-mentioned report, often because assessing a child with CP takes experience and skill.

CP is generally caused by problems before, during or shortly after birth that result in brain injury. This includes  premature birth, maternal infection during pregnancy and difficulties that interrupt oxygen supply to the brain. In the small number of cases that involve an avoidable medical error, a settlement can be achieved which can then be used to fund additional SEN support and other therapies at home, above and beyond those available from the local authority.

Expert investigations commissioned to assess the quantum value of a settlement can also provide a deeper understanding of the individual needs of a child. This can enable parents to challenge local authority decisions if they feel an assessment is wrong or a designated school is inappropriate for their child. The experts involved in such cases are specialists in treating and assessing children with CP, and work in fields such as paediatric neurology, neuropsychology and educational psychology.

The value of SEN support

Two recent cases that highlight the value of SEN support immediately spring to mind. One, a young boy, “Jordan”, had to be resuscitated at birth and was “cooled” for 72 hours in a bid to protect his brain. He spent most of his life being labelled naughty and disruptive because of his often volatile behaviour, such as shouting, biting, and being defiant and impulsive. He was regularly excluded at school. As a result, his parents were blamed for his behaviour for years by social services and health professionals.

Eventually, expert medical assessment showed that Jordan’s volatile behaviour was largely due to a birth injury. Subsequently, two to one support workers (funded by Jordan’s settlement) were put in place and Jordan was eventually allowed to attend school regularly with his support workers after months of exclusion.

Another case, run by my colleague Arti Shah, involved a young girl, ‘Evie’. Evie has quadriplegic cerebral palsy and needs  24-hour care with daily life. She will likely never be able to walk unaided outside and needs help communicating, eating, washing and dressing. Although she takes medication to control it, her epilepsy remains problematic. Her parents describe her as ‘an amazingly spirited young woman with her own, very strong personality’. 

As Evie got older, she struggled more and more to keep up with her peers in a school setting, and she became increasingly frustrated by the limitations she experienced at school as a result of her disability. For example, there were often times when Evie wanted to answer questions during a lesson, but was unable to do so because she struggled to find the words before the class moved on.

The education report commissioned as part of her case highlighted the importance of putting in place support workers who got on well with Evie and her family, and a change in personnel and more frequent contact saw great progress, particularly with homeschooling. Evie now splits her education into home schooling and attendance at her local school with TA support. The home tutor is able to teach Evie at a much more manageable pace, and working at home is considerably less tiring for her. It also improves her concentration and ability, as she has much more freedom at home, where she has the liberty to move around and find a learning position that suits her at any given time.

Perhaps the biggest sign of progress is how much Evie has grown in confidence. Knowing she has got to grips with topics she struggled with in the past means she is also much happier when she goes to school because she is confident that she knows the topics or lessons that will be discussed.

The relief for Evie’s parents is immeasurable. They have had to work hard to get in place an appropriate EHCP, sometimes having to rely on educational and medical experts at tribunal hearings to challenge decisions.

Children like Evie and Jordan depend on SEN recommendations and input from the local authority to progress in their lives.  It is up to everyone involved in making those recommendations to ensure they listen to parents and experts to ensure that they understand everything they can about CP and how it impacts lives.

Jane Weakley is a partner at Fieldfisher, with more than 20 years’ experience in medical law. She specialises in the interests and rights of birth-injured children, particularly those with catastrophic injuries where compensation awards can ensure appropriate provision to help them achieve their best possible lives.

Arti Shah is a Senior Associate at Fieldfisher, specialising in obstetric cases, particularly involving fertility issues and on maximum severity claims involving cerebral palsy and brain injuries.

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