How rehabilitation and support can help a child with an acquired brain injury to flourish and reach their potential

26 July 2022

Bolt Burdon Kemp talk us through the importance of rehabilitation and how to make the rehabilitation journey a positive and successful one

How rehabilitation and support can help a child with an acquired brain injury to flourish and reach their potential

26 July 2022

Bolt Burdon Kemp talk us through the importance of rehabilitation and how to make the rehabilitation journey a positive and successful one

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My team and I are both proud and privileged to act for the most amazing, brave and courageous clients – children who have sustained acquired brain injury as a result of medical mistakes and accidents.

Why do parents seek advice about making a claim?

In my years of representing children with acquired brain injury, I have found that most parents seek legal advice for one or more of the following reasons:

  • They really want to make sure that what they and their child have gone through won’t happen to another family, that lessons have been learned and that the mistakes that caused their child’s brain injury will never again be repeated;
  • They are starting to realise just how complex their child’s needs are and are worried about being able to afford the support needed to help their child fulfil their potential;
  • They worry about the future. Often, they are concerned about what will happen to their child and how their needs will be met when they, the child’s parents, are no longer alive.

Regrettably, we can’t turn back the clock. What we can do though, is do our very best to secure compensation for the children we work with to ensure their needs will always be properly met and that they will flourish and fulfil their potential. We hope the children we support will go on to lead happy and fulfilled lives and that compensation will bring their parents peace of mind.

There is often little awareness about what a compensation claim can help to achieve and exactly what types of support it can fund. For some families, there may be a real reluctance to advance a claim or an understandable lack of energy or appetite to even investigate whether a claim might be possible and how it might help, particularly when many parents are having to cope with the daily reality of caring for a child with complex needs.

Whilst the NHS provides support to everyone, the unescapable reality of high demand, waiting lists, finite resources and staffing issues are challenges that everyone faces. A compensation claim can go some way to speeding up and enhancing the support that is available and many parents, once they become aware of this, certainly feel that making a compensation claim is something worth exploring.

Why is rehabilitation so vitally important?

As a direct consequence of acquired brain injury, a child can have lifelong complex and evolving needs. Many of these children will require a specialist care and rehabilitation programme.

The core aim of rehabilitation is for the injured child to be able to live as independently as possible. With the right support and input, some children have successfully gone on to achieve full independence. Others, due to the extent of their injury, will always be dependent on support for their care and to meet their daily living needs.

It is important to secure a set up that allows the injured child to be as independent as they can be, even if they will never achieve full independence.  The reason for this is simple – increased independence and self-reliance are intimately linked with self-esteem and a better quality of life.  This facilitates greater social integration and results in greater social acceptance, which is a truly positive outcome, and one that many parents fear will be out of reach for their child when they commence their rehabilitation journey.

The importance of early care and rehabilitation

The sooner a child can access a care and rehabilitation programme, the better – for not only the child (as early rehabilitation can result in better therapeutic outcomes), but also for their family. Many parents find they have to reduce their working hours or even give up work to meet their child’s needs and also to help cope with both the trauma caused by the injury and the impact of supporting a child with a brain injury.

Battling for their child’s needs to be met properly, for example with schools, healthcare providers and the local authority, can be both time-consuming and exhausting.

Some parents with more than one child also find that, unavoidably, because of their injured child’s complex needs, they have to devote more time and attention to that child than would have been the case if the injury hadn’t happened, and consequently, they have less time available for their other children and they fear they will suffer as a result. This can be a very upsetting position for parents to find themselves in and can lead to feelings of guilt and conflict. Setting up a care package as soon as possible, helps ensure parents have more time available for all of their children.

What goes into making a rehabilitation journey a positive and successful one?

A specialist care and rehabilitation programme is made up of:

  1. Specialist care, provided by support workers or nurses where appropriate, to ensure the child is safe and that their care needs are met;
  2. Specialist therapy. This list is extensive and will be determined by the individual needs of each child. We give consideration to:
  1. Physiotherapy – to help promote and maintain movement and flexibility;
  2. Speech and language therapy – to develop communication, speech, social skills and also to promote eating and drinking;
  3. Occupational therapy, including specialist advice on equipment and housing – to facilitate independence and also sensory integration therapy for children with sensory needs;
  4. Music or art therapy – to help make the above types of therapy fun if a child is struggling to engage;
  5. Neuropsychology input – where appropriate, a neuropsychologist will devise a bespoke positive behavioural programme. The aim of this will be to manage the complex combination of physical, cognitive, psychological and behavioural symptoms that have resulted from a child’s brain injury. The right programme will ensure that all the consequences of their brain injury are dealt with and that the child is supported in the best way possible. Training will be given by the neuropsychologist to key people in the child’s life, including family, support workers and school staff to ensure consistency of approach;
  6. Educational psychology and educational consultancy input – to ensure the child’s school placement and provision is appropriate and the child can thrive at school and if appropriate, in further education settings;
  7. Assistive technology devices – to facilitate as much independence as possible, such as communication aids, and/or eye gaze technology and also specialist technological play equipment which helps promote therapeutic goals,;
  8. Specialist equipment – including wheelchairs, hoists, specialist toilets, baths and body driers, specialist toys and play equipment;
  9. Specialist vehicles – big enough to accommodate the child, their family, any support workers and any essential equipment with ease or, if a young person is able to drive, a specially adapted vehicle to facilitate their driving and independence;
  10. Adapted and specialist accommodation – with enough space and a bespoke layout to help facilitate the smooth running of a care and rehabilitation package and adequate storage of the client’s equipment and vehicle.

When can we access funds for care and rehabilitation?

It is possible to obtain compensation whilst a child’s case is progressing and not just at the end of the claim.

We always to try to secure an early admission of liability from the Defendant, be it the NHS Litigation Authority, a medical defence organisation or an individual represented by an insurer. This is effectively a formal acceptance of both responsibility for the negligence or mistake which occurred and also an acceptance that the negligence or mistake actually caused our client’s brain injury.

Once the Defendant has admitted they were at fault and that their mistake caused the injury, it is possible to access early payments of compensation known as ‘interim payments’.

These interim payments can then be used to fund the child’s needs until such time as a firm medical prognosis can be given by key medical experts in the case. It can take some time before a firm prognosis can be given. Only at that point can a child’s claim be accurately quantified and negotiations entered into with the aim of achieving a final settlement of the case to meet the child’s lifelong and complex needs. Many parents find it really reassuring to know that a claim can enable them to access help for their child, even whilst a case is ongoing. That help is often vitally needed whilst navigating the litigation process.

Interim compensation payments – what do they fund?

Once liability has been resolved, the funds can be used to help improve the child’s quality of life. This can be focussed on one or many of the following key areas:

  • Care and rehabilitation

Interim payments can fund bespoke care and rehabilitation packages.

The first step is to involve a specialist brain injury case manager to work with the family to set up, organise and deliver a bespoke care and rehabilitation package for the child and to coordinate exactly what is needed to meet their requirements.

The case manager will identify exactly what therapeutic support is needed and will engage treating therapists to work directly with the child. These therapists provide bespoke training and support for the key people in the child’s life such as their family, support workers and school staff. They will also have direct therapy sessions with the child as appropriate.

The case manager will also directly recruit and supervise support workers who undergo an initial training programme and refresher training as and when required. They will consider what type of support worker is required. For example, for older children, sometimes “buddies” work well. Buddies are support workers who are younger and closer in age to our clients, are more relatable to them and who will look more like a friend of our client when out and about in the community, rather than a carer. This is really important for children in their teens who tend to be very self-conscious about having a brain injury and also may be desperate to fit in with their peers and not feel or look different.  A buddy can help them to develop their independence and confidence whilst accessing the community safely. In cases where a child has complex medical needs, sometimes input from nurses may be required.

The case manager organises regular multi-disciplinary meetings, to be attended by the family, support workers/buddies/nurses and therapists, at which goals will be set and progress regularly reviewed.

The beauty of this approach is that the entire team, including the family, is working in a coordinated way towards achieving common goals, in the best interests of the child. Goals are unique to each child, but typical goals we have seen on our cases have involved independence programmes, with specific targets around independent toileting, dressing, sustaining attention and being engaged with a particular task for a certain period of time where attention is a specific issue and for older children, developing appropriate friendship groups and engaging in community activities such as going out to cafes or to the cinema with friends and doing so independently.

  • Accommodation

The issue of accommodation is also always very carefully considered. Accommodation is often key as it is only with suitable accommodation that a care and rehabilitation package can be delivered effectively and in a sensitive way which does not feel overly intrusive to a child and their family.

Space is really important so there is not a feeling that everyone is living on top of one another. A designated room for support workers to retreat to is always recommended. Having their own kitchen and bathroom facilities especially where there is a need for night-time care is essential. Where night time sleeping care is needed, each carer will require their own bedroom.

Thought also needs to be given to the child’s therapy needs, with a designated room for therapy and possibly a sensory room and/or sensory garden. A reasonably sized garden can often have therapeutic benefits.  Storage for equipment and a car port is also important so the child can get in and out their vehicle in bad weather without getting wet and cold.

If a child is prone to making noise, a detached house may be more suitable to ensure that clients and their families do not have to contend with disgruntled neighbours, which is really the last thing anyone needs.

Sometimes, it is possible to purchase a property whilst a claim is ongoing. Depending on the circumstances, interim payments can be secured to fund the outright purchase and adaptation of suitable properties. A bespoke scheme can transform a house or bungalow to accommodate the needs of both the family and the child, with the design being informed by input from key people in the rehabilitation team to ensure it specifically ticks all the boxes for the child concerned. For example, where a child is a wheelchair user and also needs a hoist, the occupational therapist will always insist that floor surfaces are completely level and that doorways are sufficiently wide and that they line up.

Where purchase of accommodation is not possible whilst a claim is ongoing, consideration should be given to renting a suitable property. Landlords will often be amenable to long-term tenants who can afford to pay rent up-front through their compensation and we have found that this means landlords can be willing to consent to minor adaptations. Landlords may consent to converting standard bathrooms to more accessible wet rooms and also to minor building works in the garden to make it more accessible and safe. Also, it may be possible to explore the adaptation of an existing owned property or the addition of accommodation in a garden space, such as an insulated garden room for therapy and relaxation, which can be a useful temporary option, particularly whilst a family is growing and the child’s needs are not yet clear.

  • Vehicles

To make sure any vehicle purchased through interim funds is the right one, the occupational therapist in the rehabilitation team, sometimes with the assistance of a vehicle specialist, will advise as to the vehicle needed, including what modifications are required. Consideration has to be given as to who will be travelling with the child, whether that is their family and/or support workers; what equipment will need to go with the child; whether a child will be sitting in a wheelchair within a vehicle; if the child has behavioural challenges, whether some space is required between the seats to help manage their behaviour; and also, whether a screen between the rear seats and the front seats might be required to protect the driver from any objects that might be thrown. Essential equipment to enable a child to get safely in and out of a vehicle and to minimise manual handling for the child’s family/support workers, such as a specialist ramp or a specialist seat which turns and lowers the child to the ground and appropriate harnesses and seat belts will also need to be considered.

  • Specialist equipment

It may be possible to secure funds for wonderfully innovative pieces of equipment, such as height adjustable baths which have special features such as lighting, bubbles and music; toilets which have a douche facility and specialist body drying machines. All of these pieces of equipment help the injured child to live their lives as independently as possible and make life so much easier for support workers and parents. Specialist play equipment which is safe for the injured child is also essential. A good example is an in-ground trampoline, rather than a standard free standing trampoline, the former being far safer because it is level with the ground and can be surrounded by soft matting.

  • Powered wheelchairs

Where appropriate, interim funds can be used to purchase powered wheelchairs, bringing independence to young people with mobility challenges, as they will no longer need to be reliant on family or support workers to push them in a manual wheelchair. Funds can also meet the cost of specialist training for using these wheelchairs with the occupational therapist, to ensure they are used safely and with confidence.

  • Assistive technology

Where a child struggles to communicate verbally because they are non-verbal, funds can be used to secure eye gaze technology to enable them to communicate and interact effectively.

Several children that we have worked with have benefitted from having a Magic Carpet, which is an interactive projection system that projects motion responsive games and activities onto a surface such as a floor, table or bed, providing a range of multi-sensory experiences.

  • Holidays

If a family would always have gone on holiday, then there is no reason why they shouldn’t continue to do so. However, any claim will need to fund the additional cost of going on holiday with a child who has complex needs as a result of a brain injury. Children we have worked with have gone on holiday with their families, with the claim funding the pay  of the support workers who need to go on holiday with them, accommodation, travel and subsistence for the support workers, more spacious accommodation, specialist and more accessible activities and if necessary, an upgrade to business class for the child and somebody to support them.

  • Participation in family activities

Funds can be secured to enable the injured child to take part in fun activities with their siblings, for example, the purchase of a specialist adapted trike which allows the injured child to ride alongside their sibling who was riding on a bicycle. We have also secured funds to hire hot tubs and inflatable obstacle courses which again, siblings can enjoy together, but which also bring a therapeutic benefit.

  • Support for the family

Family support is fundamental to every child’s rehabilitation. To a large extent, where a child lives with loved ones, the success of any rehabilitation programme is dependent on the family’s buy-in. We always recognise that the entire family’s life as well as the child’s will have been turned upside down by the brain injury and they will be living with changes to their lives that feel forced upon them, through no fault of their own. Parents have so much to cope with, including a sense of bereavement, a misplaced sense of guilt for their child’s injuries and massive uncertainty not only as to their child’s prognosis and prospects for the future but also with regard to the outcome of the compensation claim.

They will also be worried about the impact on siblings and their development. It is therefore vital that parents and siblings be given the opportunity to express and discuss their feelings and concerns, perhaps with the neuropsychologist in the rehabilitation team or with their own psychologist or therapist. At a time when so many things seem outside a parent’s control, they need to feel they are at the heart of the process and have a voice.

A good and effective case manager will always ensure parents are involved in the regular multi-disciplinary meetings the case manager will organise to discuss progress and goals. Parents need to feel able to communicate to the case manager and the legal team, their concerns about anything whatsoever. It is really important to try to identify any potential stressors in a client’s family’s life as soon as possible and to deal with them, to ensure the family can then focus on the programme with as few distractions as possible.

Sessions with a therapist may be available to both parents and siblings. Also, where parents do not have the time to support siblings with homework due to the needs of their brain-injured child, it may be possible to obtain funding for private tutoring sessions to ensure siblings do not fall behind with their school work.

When a neuropsychologist is involved in the rehabilitation programme, they play an invaluable role in facilitating excellent communication between the family and the care and rehabilitation team, ensuring that everyone involved in the client’s care and rehabilitation package understands everyone else’s perspectives. This can guarantee the smooth running of the package and minimise resentment and conflict.

Future care and rehabilitation  

If a care and rehabilitation package is working well for a client, this is a really sound basis from which to calculate and make a compelling case for future care and therapy costs.  This will give the child concerned the best chance of achieving a settlement that can fully cater for their care and therapy needs in the future, helping them to both flourish and to fulfil their potential.

I feel incredibly privileged to be able to help children and their families at their time of need. Ultimately, there is a huge sense of satisfaction that comes with knowing we have secured compensation that makes a positive difference and brings peace of mind to people who have gone through an unbelievably difficult time, through no fault of their own.

 

Author’s profile

Caroline Klage is a Partner and Head of the specialist Child Brain Injury team at Bolt Burdon Kemp. The firm is based in London, but represents clients across the country. Caroline and her team are passionate about fighting for compensation for children who have sustained brain injury as a result of clinical negligence or due to accidents.

 

Although we are grateful to receive support from a number of corporate sponsors, we do not endorse any specific organisation. If you are seeking legal advice, we encourage you to contact a number of experienced solicitors for an initial discussion before selecting a firm.

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