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
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.
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
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
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
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
- 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
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
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
The content of this article is intended to provide a general
guide to the subject matter. Specialist advice should be sought
about your specific circumstances.