Most people think of the costs of diapers and school uniforms when imagining the financial costs of raising children. But if you have a child with complex medical needs, especially conditions like Cerebral Palsy that have arisen from complications during childbirth, the financial costs look very different. Decades-long financial costs, costs that no one expects, and financial pressures that change everything about the way a family has to live and operate.
The financial costs alone are terrible to read about, but they do not tell the entire story. Thousands of pounds in near-immediate costs, six-figure costs over a lifetime, and costs that most families would not imagine exist when it comes to the care of their child.
Immediate Costs that Start to Accrue
From the very beginning, families are faced with costs related to conditions resulting from complications at birth that healthy new-born babies do not face. Stays in hospital for longer periods of time, followed by a barrage of specialist equipment. Monitors, feeding equipment and positioning equipment. All of which does not always get covered in full by standard insurance.
Then come the costs to adapt family homes. A typical home is not designed for a child who can’t physically move well. Doorways have to be widened. Bathrooms have to be almost entirely adapted. Some families will require ground floor extensions or stairlifts before their child can even get home from the hospital. These can range anywhere from £20 000 to £100 000 depending on the needs of the child and the nature of the house.
One income for the family often is not enough, but two incomes may become impossible. Someone has to be available to tend to the needs of their child 24/7. Appointments with medical professionals and therapy sessions have to be attended on a regular basis. The loss of one income as well as the mounting debt over the years results in financial pressure parents never anticipate or expect.
Medical Care Beyond NHS Care
The National Health Service (NHS) provides essential medical care, but parents quickly learn where its limitations lie. Physiotherapy might be available here and there. Occupational therapy might take months before being provided. Speech therapy gets rationed by what services are available rather than what their child actually needs.
Private therapy takes care of all of these gaps but comes at a cost. A single physiotherapy session costs between £60-80. If a child needs three sessions a week for the first few years of their lives, this amounts to £10 000-12 000 a year just for physiotherapy alone. And if you add all other types of private therapy into it, parents are faced with spending anywhere between £20 000-30 000 for private healthcare every year.
If negligence during birth has caused all these costs, a Cerebral Palsy Solicitor can provide parents with legal support should they seek compensation for their children that can keep up with this private cost for medical care.
Equipment That Needs Replacing on A Regular Basis
Children grow. Parents learn this fact very quickly as parents of children with complex medical conditions. Wheelchairs do not fit all sizes! Parents will have to upgrade wheelchairs, standing frames, communication devices, specialised car seats, all equipment that is designed for a very specific need. Equipment that can cost anywhere between £5000-15 000 for a powered wheelchair alone. Communication devices range anywhere from £3000-8000. These devices are not just one-off purchases for parents.
Local Councils might be able to help families with some of these upgrades but not all of them, and it is dependent on budget and availability more than the actual needs and requirements of the family.
And then there are the maintenance costs that parents do not foresee when they first acquire these necessary devices to their children’s lives. Things break, every single year. A motor will give in. Software needs updating.
The Hidden Costs Nobody Talks About
Hidden expenses exist nobody cares to mention. The family faces additional heating expenses to keep the child comfortable because they might not be able to regulate temperature appropriately. Food costs go up because diets need to be tailored around children with complex needs. The laundry bills skyrocket too.
Childcare also becomes difficult to find and afford. Typical nurseries can’t take children with complex medical needs, while educational facilities that can take them charge double or even triple than what typical childcare costs, assuming that it’s even available.
The impact on parents’ careers also accumulates its own financial cost. Full-time jobs become impossible to keep due to needing to care for their children every hour of the day. Work-related travel becomes impossible as well as traveling across the country or accepting a promotion requiring longer hours at work becomes impossible.
Over a lifetime, this translates into lost earnings of hundreds of thousands of pounds parents would otherwise have made.
Education Costs Not Provided by The System
Education can be free, but once again children with complex conditions need educational systems to provide things they do not provide whilst trying to keep it accessible for all children.
Private tutoring is one area parents need to rely on when their child misses school due to medical appointments or conditions preventing them from attending in the first place.
Some children also need specialised software that assists them to learn when they cannot cope with learning disabilities typical adaptations put in place by educators.
Educational therapists also help bridge gaps in children’s learning where teachers might not have time available to provide assistance with certain tasks.
Additionally, some educational needs mean some children cannot attend typical schools and requires boarding schools, some of which are scattered throughout the country. This places financial strains on families needing to consider boarding fees or accommodations since one parent usually has to relocate with the child.
Even with an EHC (Education Health Care) plan in place that some local councils might help provide accommodations for school families still face these financial consequences and sometimes out-of-pocket expenses when they try to obtain interventions they think might assist their child.
Financial Planning for Adulthood
People also do not think about how such financial commitments do not stop once children turn eighteen but rather change and still continue every year; sometimes increasing in cost every single year. Adult social care is not funded adequately like local councils fund private social centres for younger adolescents facing complex illnesses.
Accommodations for assisted living facilities also come with huge expenses that await young adults once they turn eighteen whereas waiting lists may stretch in excess of five years’ time.
Children with complex medical conditions might wind up living with their parents for much longer than expected while still requiring special accommodations within the home from monthly therapy sessions to recommended equipment upgrades yearly.
Proper Financial Compensation Makes a Difference
When a child living with complex conditions arises from avoidable negligence during birth, compensation is essential is means more than just compensating parents who might receive windfalls.
Financial compensation becomes essential in ensuring that children receive access to every medical intervention available in an attempt to manage their needs effectively where possible. It helps replace lost future earnings parents would otherwise receive due to providing medical care for their children full time rather than focusing on forming a career.
Structured Compensation Can Make Up to Decades of Physiotherapy
Structured compensation can pay for physiotherapy for up to decades rather than months after birth.
Communication devices can also be covered by compensation that can enable non-verbal children to express themselves over time if need be.
Simple modifications like adapting a bathroom for a teenager can finally ensure that toilet facilities are easily accessible rather than adapting the whole house in complex ways.
The Financial Reality Parents Live in Every Day
The reality is parents living with complex medically challenged children are strong women and men who learn how to navigate healthcare systems only made available for healthy citizens with little resources at hand but should not have to fight these battles alone especially since negligence during birth has put them in this position in the first place.
The financial costs of raising a child with complex medical needs look like an abstract concept until you put numbers next to it, real numbers measured over days spent dealing with “the system” gaining access to resources that should already have been free and readily available, and increases daily due not just costs but re-evaluating your life as you live it again at every therapy session your child attends, as they gather these moments whereas parents cannot even find time to breathe among fighting battles against systems built against them.