The moment you become a parent, you begin to appreciate that life as you have known it will never be the same. Nevertheless, it often takes time to realize just how much change is about to come. This is especially true when you welcome a child with different needs into the world.
Setting sail in increasingly turbulent seas
Let's consider a sailing metaphor. Unless you've previously had a caregiver role where you've been responsible for someone else, you have probably spent much of your adult life as your ship's captain and sole crew member.
Sure, you may have encountered some rough seas from time to time, but you could set your own course to get back to smooth sailing as quickly as possible. Your boat may have sprung a few pin hole leaks along the way with unexpected expenses, but it was nothing that you couldn't bail yourself out of.
Suddenly, you're not the only one in the boat with the added responsibility of a child. Steering the ship with one arm while holding your child in the other makes things more difficult but still doable. Those pinhole leaks have multiplied – kids are expensive – but even if you are up to your ankles in water, at least it's not up over your head.
Somehow, most parents manage to find a way to keep the boat afloat and adapt to the demands of their new crewmates. In the case of children with Cerebral Palsy, however, the trickle of expenses can become a flood as they grow. Parents who have a child who has been newly diagnosed would do well to think about and prepare for a time when all hands will be needed on deck to bail out the boat and patch those holes.
In this blog post, I explain how the cost of care for children with CP, which can appear deceptively manageable initially, starts to add up. I survey programs that help cover some of these costs and highlight how some parents must fundraise to pay for what's not covered. Finally, I suggest why launching a birth injury lawsuit, if you are eligible, can make an enormous difference to your life and your child's life.
A Progression of Costs
When a parent first learns that their newborn or infant may have Cerebral Palsy, they usually focus on ensuring their loved one receives early interventions to assist in their growth, development, and pain management. In short, various therapies are the most significant initial expense.
Unfortunately, once parental health benefits are exhausted, so is funding for these therapies. Moreover, Children's Treatment Centres cannot be accessed until your child reaches the age of two – and with waiting lists, they may not be seen until the age of three or four. Treatments at these centres are also capped. To continue this kind of therapeutic care, caregivers must often dip into their own pockets.
Despite these early costs, there is some respite. A newborn can be carried for months without worry about aids for mobility and transportation. Moreover, a child may not need specialized equipment until they are older, and a family can often "make do" with off-the-shelf equipment that can be modified.
As your child ages, however, the need for specialized equipment increases – and so do costs.
Funding Strategies
Once children reach an age where they would otherwise begin to be mobile on their own, standers or specialized chairs are usually necessary. Additional assistive interventions such as hearing aids, cochlear implants, or special feeding equipment might also be required. Finally, the necessity for modifications to your home in terms of accessible washrooms, lifts, or ramps may become increasingly apparent.
By this point, parents may be well and truly feel a financial strain as they attempt to buy what their children need to live their best lives. Although there are government programs to help minimally cover the cost of some of these expenses, they usually do not provide anywhere near enough funds to cover everything required.
For example, while the government will cover part of the cost of a wheelchair (either manual or a power chair), they will not cover both, and there are restrictions on how frequently these are subsidized. A family that chooses a power chair as the best option for their child would still need to use their own funds to purchase a manual chair as a back-up.
For more significant purchases such as power chairs or the cost to send a child to camps designed for children with disabilities, some families approach volunteer organizations (including Lion's Club or Easter Seals), launch GoFundMe campaigns, or create their own fundraisers and raffles.
While the goodwill of the community and friends is evident in the success of many of these fundraisers, it can be time-consuming and stressful to depend on them for much-needed items and programming.
Government Assistance
In addition to special tax credits, there are government programs every parent of a child with cerebral palsy should know about. While these programs will rarely provide all that you and your child need, they will help defray the cost of some of your expenses:
- The Assistance for Children with Severe Disabilities Program provides low to moderate-income families between $25 to $580 per month to help with disability-related costs. Funds are distributed based on income, family size, the severity of a child's disability, and extraordinary expenses related to the disability.
- The Ontario Assistive Devices Program covers 75% of most equipment and supplies. Usually, the supplier bills the program for its portion of the cost of the device and the applicant pays the remaining 25% at the time of purchase. In other cases, the program sends a series of payments throughout the year to cover the cost of supplies.
- The Ontario Special Services at Home program provides up to $10,000 per year to caregivers of children with special needs to cover primary caregiver relief and related supports and recreational activities to promote personal growth or development for the child. The amount an applicant receives is based on the type and amount of service your child needs, other community services available, and the kind of support they already receive. Many families tend to receive around $3,000-$4,000 per year.
- The Ontario Medically Fragile Technology Dependent Children program provides funds (up to $3,973 per child for the 2022–23 fiscal year) to spend on respite care for caregivers of a medically fragile child and/or who depends on a technological device and requires round-the-clock care.
- Home and Community Care Support Services, previously known as Local Health Integration Networks (LHINs), provide a certain number of hours for nursing care or personal support workers based on eligibility criteria.
What More Can Be Done?
While all parents and caregivers of children with cerebral palsy are likely grateful for the government and community services available, most still struggle with the extra costs associated with providing the best care possible for their loved one.
Still, I am surprised by how often I meet parents and caregivers of kids with a childhood disability who are reluctant to explore the one source of financial assistance for these children I have yet to mention – a medical malpractice birth injury lawsuit.
If you've ever had a question about what caused your child's CP, it's worth reaching out to a lawyer. A child who acquired cerebral palsy through a medical provider's negligent breach in the standard of care may be eligible to file a claim for compensation and damages.
A medical malpractice lawsuit is not about vengeance but determining if your child deserves compensation for what happened to them.
We all know that doctors, other medical professionals, and hospitals make mistakes, and it is exceedingly rare that the harm our loved ones suffered was intentional. But preventable harm was still done, and we, as parents and caregivers, are now left caring for these children and finding ways to cover all the additional expenses that come with their special needs.
The lifetime of care some children require is not always apparent in the weeks and months after discovering their disability. For instance, a person taking temporary parental leave to care for their newborn may eventually find that they must give up their income entirely to provide care. Moreover, as parents and caregivers age, their children may require care they can no longer deliver on their own.
A settlement or court awards for damages from a medical negligence lawsuit can provide funds that will make an enormous difference in your child's life. It can also significantly ease the additional stress you and your loved ones would otherwise experience as you try to make ends meet. To return to my boating metaphor, compensation from a lawsuit can provide wind in your sails as you chart a course for the best life possible for your child.
If you or a loved one is providing care for a child with CP, consider all the options available as you plan for the years ahead. To learn more about how Gluckstein Personal Injury Lawyers can help, please contact us for a free consultation.