Help with care for families with a child with cerebral palsy

If your child has cerebral palsy or neurodevelopmental disability after a birth or neonatal brain injury, it is likely that throughout their life they will have additional needs for extra care. 

You may have assumed that the therapies and support that are essential for your child’s health and wellbeing will be provided by NHS and social care, but many families find that the NHS does not have the resources to meet the needs of their brain-injured or severely disabled child. Without support from the system, devoted parents provide as much care as they can for their child until they reach a breaking point where sole-caring becomes impossible owing to exhaustion, age or health concerns and their inability to meet their child’s increasing needs. For many families, their daily physical struggle is compounded by financial worries, and fears about what will happen to their dependent child when they are no longer able to look after them.

If your child’s cerebral palsy or neurodevelopmental disability was caused by a birth or neonatal injury, they may be entitled to compensation, including provision for lifelong support with private, personalised care. In most of our cases, this support starts whilst the claim is ongoing, and continues after settlements which include guaranteed provision to meet the child’s additional care needs for the rest of their life.

Personalised care has a life-changing impact on the child’s ability to participate in family, educational and social activities, and (in later years) can support them in becoming more independent. After years of struggling to manage their child’s disability, parents find that accepting additional care for their child helps restore balance to their family roles and relationships, enabling them to love and guide their child as parents, supported by professional carers who ensure that their child’s disability-related needs are properly met.

Whether you have questions about your child’s future after a recent cerebral palsy diagnosis, or are caring for an older child or teenager with disability from an injury at birth, this page may help you find answers to some of the questions that families ask us about finding help with care via compensation.

To find out more about how whether your child might be entitled to compensation, you can talk to one of our specialist cerebral palsy claims solicitors, free and confidentially, by contacting us.

When will I get help with my disabled child’s care?

Parents of children with cerebral palsy or neurodevelopmental disability, but especially those with older children or teenagers, are often exhausted by the time they consider seeking help with a claim to pay for care. We understand their hardship and aim to alleviate it as quickly as possible by obtaining an interim payment.

As soon as we have a full admission of liability from the NHS’ legal defence team at NHS Resolution, we apply for a substantial interim payment. An interim payment is a part-payment of the injured child’s compensation which is paid in advance, whilst we work towards settlement of the case. We use interim payments to help families meet their child’s immediate needs. One of the most urgent needs is usually for help with care.

Depending on the child’s age and the extent of their disability, and how quickly their expected future disability and needs can be assessed, multiple interim payments may be obtained to provide care, therapies and meet the child’s urgent needs before the final compensation settlement at the end of the claim. Cases are often adjourned when a very young child needs time to develop before their future needs can be assessed by our medical experts. In many such cases, we have secured very substantial interim payments allowing us to help the family receive additional care for the child with practical support from a case manager and Court of Protection deputy, and move to a more suitable home with additional (separate) space for their child’s carers.

Setting up a care routine early allows the family to find out what care arrangement works best for their child. Our experienced solicitors’ advice and support throughout this initial set-up stage of care also provides reassurance and helpful guidance to the family during this transformative time. Having a successful care arrangement in place before any claim or proposed settlement is presented to the court also helps the court to understand the benefit of an ongoing care arrangement for the child. This avoids uncertainty and reduces the risk of a smaller amount of compensation being awarded for the child’s future care.  

Do we really need help with professional care?

We understand that as parents you expect to provide loving parenting and support for your child, in line with their age, developmental stage and family arrangements. This is the type of care that, as parents, you would have provided for your child in any event. Nobody else can replace the parental love and support that you give to your child, and this kind of parental support is not considered or compensated in a cerebral palsy claim for care.

When we talk about ‘care’ for the purposes of a claim, we are referring to additional caring responsibilities that arise from your child’s disability, over and above the normal loving care that, as parents, you would have given your (uninjured) child. Depending on your child’s disability, additional care may mean regular heavy lifting of an immobile child from their bed or chair, or carrying them (and their wheelchair) over steps and thresholds and through inaccessible corridors. It may involve regularly disturbed sleep, waking frequently to turn the child in their bed at night, or handling their personal care at an age when they would have been expected to toilet, bathe or feed themselves. It could involve additional time spent on laundry owing to the child’s incontinence or excessive dribbling, or providing support with home-based physiotherapy and other therapeutic exercises, or living with the constant demands of looking after a child with behavioural issues. In addition, parents often spend a disproportionate amount of their time dealing with appointments, calls and other administrative tasks, simply to keep up with the needs of their injured child.

Over time, these additional caring responsibilities affect parents’ physical health and cause stress and exhaustion from sleep deprivation. This reduces the quality time that they spend with the injured child and their other children, or their ability to work, causing additional stress from financial worries. We have seen how the most loving, patient and dedicated parents become exhausted or unwell from the demands of caring for a severely disabled child. For this reason, we offer compassionate support for families who are coming to terms with the fact that it may be in their child’s and family’s best interests for them to accept some additional help.

We understand how hard it can be for a parent who has coped alone for many years to accept help with looking after their child. Parents often feel (completely unjustified) feelings of guilt or failure, or fears about what friends or family might think. We reassure caring parents that seeking help with care does not mean giving up their parental involvement and ‘first place’ in looking after their child. In our experience, once reassured, most families of children with severe cerebral palsy or neurodevelopmental disability welcome the relief and support that comes from having some carefully managed professional care, supported by a move to a more suitable family home.

Our case managers and Court of Protection deputy ensure that, as parents, you always remain fully involved in all decisions relating to your child’s care.

What is gratuitous care?

Claims for cerebral palsy or other birth or neonatal brain injury disability usually include claims for two different types of care. Professional care means the help that the child will need throughout their lifetime from paid carers, who will usually be recruited, selected and managed by the family’s case manager, and will provide care to the child at the family home.  The other type of care relates to the additional care that the child’s parents or wider family freely provides for the disabled child, over and above the usual care that the parents would have given to their child if the injury hadn’t occurred. This is known as ‘gratuitous care’.

The amount of professional care that a disabled child will receive depends on the child’s needs and the family’s preference, and may be adjusted according to the changing needs of the child over time. Some parents prefer to carry on providing most of their child’s daily care with only minimal help from professional carers whilst the child is still young, knowing that money will be available to pay for their child’s care when they are older.  Where the parents continue providing most of the child’s care, additional professional support can be arranged to provide respite or night-time care, or help at challenging times of day, or to support specific activities, such as when the child and family go away on holiday together.

What is a case manager?

Caring for a severely disabled child involves much more than simply providing physical support and personal care, so we recommend that claims for children with cerebral palsy and neurodevelopmental disability also provide for a case manager to support the child and their family. A case manager is a specialist, usually with a background in health or social care, who helps the family identify the support that they need, and then takes responsibility for sourcing, coordinating and managing services such as care, therapies or specialist equipment.

As soon as we are expecting an interim payment to provide for the needs of the injured child, we appoint a specialist case manager and introduce them to the child and their family.

The case manager works closely with the family and has an important role in putting in place and managing any professional care and therapies that are needed for the disabled child. This includes handling all the paperwork, administration and communication involved in recruiting, employing, coordinating and managing carers, and arranging hospital and therapists' appointments, as well as liaising with our cerebral palsy team, the Court of Protection deputy and anyone else who is involved in providing care for the disabled child, and then ensuring that everyone works together.

Can our child’s care take place at home?

Compensation to help with care for a child with cerebral palsy or neurodevelopmental disability enables your child’s disability-related needs to be met fully at home.  Whilst ‘professional care’ might sound clinical, the care arrangements that we set up for disabled children are not intended to distance the child from the family or their home, but provide the care that they need so that they can participate more fully in family life and activities within the family home. This allows parents to have a more balanced relationship with their disabled child allowing them time and space to be more than a  carer, in keeping with the child’s age, developmental needs and family arrangements.

We work closely with you, as parents, and your case manager to ensure that your child’s home-based care fully meets their needs whilst also respecting your family’s preferences. Some families prefer to begin with part-time or occasional help with professional care, such as for respite or when taking the child and family away on holiday. For others, there may be an urgent need for overnight help (waking care), or regular, full-time help from carers.

Where the child needs substantial, additional professional care, we support the child and their family in moving to a more suitable or adapted home which can accommodate space for carers and equipment whilst maintaining the family’s privacy within the home.

Will my child also have help with care away from home?

In addition to help with their personal care needs at home, your child may also benefit from additional care and support in other environments.

Our cerebral palsy, SEN and Court of Protection deputyship teams arrange for children, teenagers and young adults to have the support that they need to learn and participate fully at school or college, or for supported living and studying at university. Professional carers can also help your child to take part in sports, leisure and social activities, and can help with travelling and staying away from home, so that you can all enjoy family holidays together.

Looking to the future, many young adults with cerebral palsy and neurological disability rely on professional support to be able to work, and to live independently.

Will my child’s cerebral palsy compensation cover the cost of their care for life?  

It is natural for parents of children with disabilities to worry about how their child will be cared for when they are no longer able to provide care or when the child outlives them. We know that the need to provide for their child’s care in future is often the primary reason why families claim compensation after birth injury, and we assure them that our cerebral palsy team builds safeguards into the compensation process to meet the child’s care needs both in the immediate and long-term future.  

It takes specialist expertise to assess and secure full value compensation for a child with a lifelong condition, such as cerebral palsy or neurodevelopmental disability. For this reason, it is vital that you ensure that your child’s claim is handled by claimant-specialist solicitors with experience in complex and high-value birth injury or neonatal brain injury claims. This is especially important where the child has complex or severe disability and a long life expectation.

As soon as we establish the hospital’s liability for the child’s birth injury, we arrange for our multidisciplinary team of medical and care experts to assess and advise on the child’s future disability. This ensures that we understand the child’s  life-long needs and include the cost of meeting those needs in their claim.

Once compensation is expected, such as from an agreed interim payment or settlement, we appoint a Court of Protection deputy to ensure that money will be available when needed to pay for the child’s care, but is also properly managed and protected. Where a deputy is not needed because the child is expected to have full mental capacity in adulthood, we help the family set up a personal injury trust, managed by professional trustees.

Safeguards are also built into the final compensation settlement which, in the case of a child with a long life expectancy, usually includes a periodical payment order (PPO) to provide for the costs of care. This means that a proportion of the settlement is paid as index-linked, tax-free annual payments which are guaranteed to continue for the rest of the child’s life, so that money is always available to pay for their care.

In addition, the child has the continuity and ongoing support of their Court of Protection deputy and our deputyship team.  

Read more about PPOs and how they are used in cerebral palsy compensation claims.