Coping with change -managing transition in cerebral palsy

Life is a series of transitions. We go from babyhood to nursery, from primary education to senior school. For some there is another leap to further or higher education before moving out as adults into the world of employment. For most of us the significance of each stage is determined by educational and social choices. With cerebral palsy it’s not that simple. Lack of co-ordination between paediatric and adult health services and communication failure between providers all add to the difficulty of securing appropriate and seamless provision for the person with cerebral palsy as they move from one life-stage to another amidst a background of changing needs.

The recent NICE Guideline for Cerebral Palsy in Under 25s makes specific recommendations aimed at reducing the challenges of transition.

The guideline emphasises the importance of continuity of care and reminds healthcare providers:

• to recognise that with cerebral palsy there may be more than one transition – from school to college, to residential education and to an adult home setting
• to ensure as a minimum standard of care that the person with cerebral palsy has access to adult services locally and regionally with healthcare professionals who understand the management of the cerebral palsy
• that communication is important at each stage
• to recognise that functional challenges, such as eating, drinking, swallowing, communication and mobility will all change over time

As a child with cerebral palsy moves into their teens their parent-carers face a variety of new challenges. Some are physical  – a larger disabled child or teenager is harder to lift, increasing the difficulty with bathing, transferring from bed to chair or wheelchair to toilet. As the parent ages they may have their own health concerns which makes it more difficult to provide safe and reliable care. Years of day and night-time caring may already have taken their toll.

Educational challenges arise as school provision changes or comes to an end. Emotional challenges increase as parents come to terms with accepting that they are not always going to be there to care for their child. What will happen in the future? How can they provide security for their child’s future care?

At Boyes Turner, our clients come to us at all stages of the child and young person’s early life but often in their teens as needs change and they face increasing challenges. They may need additional help with care or support to enable them to move to independent living. They may need help to fulfil their educational potential, improve their quality of life or gain security for the future.

We are uniquely qualified to help young people with cerebral palsy who face challenges at this difficult time. Where the brain injury was caused by birth or neonatal negligence or as a result of an accident that was someone else’s fault,  we are experts in securing maximum level compensation awards which can help provide care, adapted housing, therapies and specialist equipment to improve the life of the young person and their family carers. We work with case managers who are skilled in co-ordinating care provision and our Court of Protection and professional deputyship experts can help provide security for the future, advise on grants and benefit entitlements whilst relieving parent-carers of the administration that is involved in managing the young person’s finances.

Our Education team work exclusively in the area of special educational needs (SEN). They can help obtain the  right special educational needs support for further education up to the age of 25. Their services extend beyond cases where the injury was caused by negligence and is tailored to whatever level of input the client feels is most comfortable.

Where a young person has cerebral palsy with retained mental capacity, we are sometimes approached by the older teenager or young adult who may decide to investigate the claim that their parents were not emotionally able to contemplate when they were younger. This is often the case where athetoid or dyskinetic cerebral palsy has been caused by an acute, hypoxic event in the final minutes of labour as a result of negligent care. The disabled  young person may have heard family stories of the mistakes that were made at their birth and wonder whether something can still be done. In such cases, the law provides a limitation deadline which means that a person with sufficient mental capacity to manage their own affairs generally has until their 21st birthday to issue proceedings in their claim, failing which they may be statute barred from proceeding. Where the young person is mentally as well as physically disabled by their cerebral palsy, the time limit for issuing proceedings may not apply.

Our clients often talk about the relief they feel at the conclusion of a claim, which comes from knowing that their child’s future needs will be met. Where those needs are expected to change over time, we negotiate settlements for payment of the damages by a lump sum with regular periodical payments for the remainder of the disabled person’s life. Index linking for inflation-proofing and staged increases in the scheduled payments provide added security by ensuring that additional money will be available at key transition points in the disabled person’s life to reflect their changing needs.