MARCH 2025 • VOLUME 32 • ISSUE 1
There is hope, there is help!
Empowering Lives Through
Financial Education &
Support
M A R C H 2 0 2 5 | O B I A R E V I E W
Also Inside
Ruth’s Desk - Financial Realities After Brain Injury ............................................ 4
I Am the Face of Brain Injury: One Eye, One Arm, One Leg, & Zero Complaints ......... 6
Spotlight On Research: The Financial Impacts of Brain Injury ................................ 8
I Am the Face of Brain Injury: What I Wish We Had Known Then - About Stroke ...... 13
I Am the Face of Brain Injury: The Strength Is In The Struggle ............................... 23
2025 Provincial ABI Conference - Call For Abstracts Open ..................................... 26
Budgeting Tips .......................................................................................... 27
Feature: OBIA/Brock Children & Youth With ABI/ Concussion Program ............................. 28
Around The Province .................................................................................. 29
Join OBIA's Return to Work Program ............................................................ 32
I Am the Face of Brain Injury: Ebbs & Flows ........................................................ 33
Brain Injury Associations (Local & Provincial) ............................................... 40
Become A Volunteer Mentor For OBIA's Peer Support Program ....................... 44
Events Calendar ........................................................................................ 48
Advertiser Index ........................................................................................ 50
BOARD OF DIRECTORS
President:
Zeenat Khoja
Past-President
Alice Bellavance
Vice-President
Dr. Fred Pelletier
Treasurer
Gary Sanghera
Corporate Secretary
Claire Smith
Directors
Harrison Cooper
Robert DiGiovanni
Kamilah Francis
Maxine Fyffe-Roberts
Lisa Joubert
Lisa Kakonge
Johanna Lim
Keith Lindsay
Sophie Weaver
OBIA Advisory Council Representatives
Dave Gaylor
Teryl Hoefel
Stephanie McGill
OBIA STAFF
905-641-8877 or 1-855-642-8877
Toll-Free HELPLINE:
1-800-263-5404
Chief Executive Officer
Ruth Wilcock ...#238
Financial Controller /
Assistant Director of Operations
Ad Lewis ...#230
Assistant Director of Outreach & Programs
Lauren Hough ... #232
Brain Injury Care Coordinator
Lekshmi Jayakrishnan...#251
Support Services & Network Advocate
Allison Reynolds ...#107
Clinician/Support Group Facilitator
Vijaya Kantipuly ...#249
North Eastern Ontario Care Coordinator
Virginia Hack ...#243
Provincial Peer Support Coordinator
Carla Thoms ...#227
Return to Work - Project Lead
Zoe Fallis ...On Leave
Return to Work - Mental Health Coordinator
Mackenzie Klauck ...#105
Return to Work - Program/Research Coordinator
Opeyemi Adegbemi ...#106
Return to Work - Occupational Therapist
Gillian Cattle ...#804
Training Coordinator & Special Projects
Leah Hughes...#102
Member, Donor & Event Coordinator
Terry Bartol ...#234
Communications Coordinator
Kriti Sharma ...#103
An Insight Into Financial
Support Programs
Growing an Idea:
The Expansion of
The Central Link
ABI Resource
Library
17
37
34
INSIDE THIS ISSUE
Copyright 2024, Ontario Brain Injury Association, PO Box 2338 St. Catharines, ON L2R 7R9
Ph: 1-800-263-5404 (Helpline), 1-855-642-8877 or 905-641-8877 (Admin)
Fax: 905-641-0323, Email: obia@obia.on.ca
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obia@obia.on.ca
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Estate Planning for
Canadian Families
with a Disabled Family
Member
O B I A R E V I E W | M A R C H 2 0 2 5
"Hamilton
Health
Sciences &
OBIA have
developed
a valuable
resource: the
Motor Vehicle
Collision
Patient Guide."
RUTH’S DESK
By Ruth Wilcock
Chief Executive Officer, OBIA
Financial Realities After Brain
Injury
A brain injury brings profound and
far-reaching challenges, affecting not
only the individual but also their loved
ones. These challenges extend beyond
cognitive, physical, and emotional
impacts—they can also place significant
strain on marriages, relationships, and
families. While brain injury brings
many uncertainties, one certainty is its
complexity. I often think of brain injury
as an intricate root system, spreading in
many directions and touching different
aspects of a person’s life in unique ways.
Among these far-reaching roots is the
financial impact, which can present
significant challenges for individuals
and families navigating life after a brain
injury.
Finances, in and of themselves, are
complex, and every family approaches
financial matters differently. However,
financial concerns can become even
more difficult after someone sustains a
brain injury. For some, it means a sudden
loss of income—not only for the person
injured but also for family members who
may need to become full-time caregivers.
The challenge of maintaining financial
stability while managing the demands of
recovery and care can be overwhelming.
For those injured in motor vehicle
collisions, navigating financial and legal
matters can be especially complicated. To
support individuals through this process,
Hamilton Health Sciences and OBIA
have collaborated to develop a valuable
resource: the Motor Vehicle Collision
Patient Guide. This guide provides
accurate and reliable information to help
individuals affected by brain injury to
better understand their rights and access
available support.
Please click here to view the guide. Some
of the key topics covered in the guide
include:
• Notifying your insurance company
as soon as possible after the injury.
• Seeking legal consultation with
a personal injury lawyer who has
specific experience in brain injury
cases.
• Keeping records of your loved one’s
care plan and medical expenses.
• Working with the acute health care
team to create a rehabilitation plan
tailored to long-term needs.
The guide also includes important
information about financial management,
including the decision between lump-sum
payments and structured settlements.
While some individuals may receive
structured settlements or financial
compensation, many do not, particularly
those whose injuries did not occur in a
motor vehicle collision. Understandably,
this leaves countless individuals and
families struggling to make ends meet
M A R C H 2 0 2 5 | O B I A R E V I E W
while also coping with the immense challenges of brain
injury. The financial strain can add another layer of stress to
an already overwhelming situation, making it difficult to focus
on recovery, rehabilitation, and emotional well-being.
At OBIA, we recognize that every person’s journey after brain
injury is unique, and we believe that financial struggles
should not stand in the way of accessing essential support.
Unfortunately, for many, this is not the reality, leaving
individuals and families overwhelmed. While we do not provide
financial guidance, we can connect those affected by brain
injury with experts in financial planning, legal matters, and
other relevant resources. Our goal is to ensure that no one has
to face these challenges alone and that the right information
and support networks are within reach.
If you or a loved one has been affected by brain injury and
need support, OBIA is here to help. ◊◊◊
JointheBrainInjurySpeaksStakeholderEngagementNetworkand
JointheBrainInjurySpeaksStakeholderEngagementNetworkand
becomeapartofanexcitingandgrowingcommunitytoimprovethecare
becomeapartofanexcitingandgrowingcommunitytoimprovethecare
andsupportofthoselivingwithBrainInjury.
andsupportofthoselivingwithBrainInjury.
Visit:obia.ca/get-involved/brain-injury-speaks
Visit:obia.ca/get-involved/brain-injury-speaks
O B I A R E V I E W | M A R C H 2 0 2 5
One Eye, One Arm, One Leg, &
Zero Complaints
How a recumbent trike gave me back a piece of my life.
On December 1, 2012, at age 51, I experienced a massive
stroke that left me unable to use my left limbs and with
impaired vision on my left side – thus one eye, one arm and
one leg. While the stroke didn’t take my life, it did take away a
lot of things I liked about life. As a life-long sports enthusiast,
I was stunned that in the span of half a second, I could no
longer cycle, ski, or sail. These were difficult things for me to
process. Therapists of all types were quick and quite correct
to point out that things could be much worse; I still had my
memories and the ability to communicate. Of course, I am
grateful for these things, but sports were part of how I had
defined myself, and it felt as though I was disappearing as
I lost them. Then, something interesting happened. While I
was in recovery at Toronto Rehab, I discovered that my left leg
could still push a pedal while I was on a training bike. Perhaps
after 45 years as an avid cyclist, my body still recognized
this action. It took three physios to help me transfer from my
wheelchair onto the trainer, but once in the saddle, I could
make it work. I couldn’t keep the affected leg straight, and
my left knee flopped out uncomfortably to the side until they
used a TheraBand to hold the knee in line.
Next, I learned about recumbent trikes, and the idea that I
might once again be able to ride outside began to take shape.
After countless hours on Google searching for recumbent trikes,
I experienced some serious sticker-shock at the price of these
things (more than I spent on my first car. Granted, that was 30
years ago, and it wasn’t much of a car.) Fortunately, I found a
used trike. It was a terrific trike, at a good price, but I had to
have it adapted for my physical requirements; I needed all the
controls moved to the right-hand grip so I could steer, brake
and shift gears using only my right hand. The cost of these
By: Brett Rathbone
This photo captures the moment I began to truly comprehend the impact of my stroke.
In a single heartbeat, I was robbed of some of the activities that I had defined myself
with. The items themselves didn’t matter, but they represented to me how my life,
and my sense of who I am, was being diminished.
M A R C H 2 0 2 5 | O B I A R E V I E W
modifications was also a shock, and there are only a handful of
bike shops in the Greater Toronto Area that carry, or even work
on, recumbent trikes. So, I bit the bullet and have no regrets
about it. I bought my trike in 2014, and in the subsequent
years, I have ridden literally thousands of kilometers.
In July of 2022, I took my riding to a higher level. At that
time, a student working at CHIRS (Community Head Injury
Resource Services in North York), of which I am a client and
beneficiary of being part of an amazing community of survivors
and support staff, began promoting the S.M.A.R.T. goal-setting
approach (you probably know this as the acronym for: Specific,
Measurable, Achievable, Relevant, and Time-bound). I selected
for my goal to ride in the BIST (Brain Injury Society of Toronto)
fundraising event that September. (It was certainly a specific
goal at 35 kilometers, but, in this case, the “S” could also
have stood for Scary because 35k was a much longer ride
than I had done before.) It was Time-bound (September 29).
I knew I had to get ready and set my training plan as riding
five kilometers a day. I did just that for the 8 weeks leading
up to the ride.
Following the ride, because the regular activity was making
me feel stronger and fitter, I just kept on with 5k per day, on
most days, even to the present moment. In 2024 alone, I
have logged more than 660 kilometers; representing countless
hours spent outdoors in the sunshine with my family. The
impediments my brain injury brought me are tremendous
hurdles that led me to become quite bitter for several years.
Perhaps riding a bike can’t change everything, but for me, it
re-introduced a source of joy that I thought was lost forever. All
that time on my trike; having fun with my family, has refocused
me on the things that I love about living. It’s hard to complain
when you’re loving your life.
I am much stronger today than I was three years ago; riding
further and faster than I could have imagined a decade ago.
This strength has also translated into being a stronger walker
and more stable on my feet. I still face those same hurdles
that my brain injury gave me twelve years ago, but now, I face
them with more confidence and hope. I look forward to next
year’s cycling season, and perhaps I’ll see you on the trail
riding, walking, or rolling. I’ll be the guy in the fluorescent
green helmet, and please do wear a helmet! ◊◊◊
I was happy to discover a little nature in the city, at Tommy Thompson Park in Toronto.
This trail is too long, and too rough for my wheelchair. I would be happy to walk this
trail; indeed, more so, but the trike is the only option that works for me. Whether it’s
walking, riding, or rolling, the point is to get outside, get exercise, and experience joy.
I’ll see you out there!
O B I A R E V I E W | M A R C H 2 0 2 5
The Financial Impacts of Brain
Injury
By: Leah Hughes, Training Coordinator & Special Projects, OBIA
Brain injuries, ranging from mild concussions to severe
traumatic brain injuries, affect millions of people worldwide
every year. While the physical and emotional toll of these
injuries is often front and centre in discussions, the financial
impact on individuals, their families, and caregivers is often
overlooked, but equally profound. The costs associated
with brain injuries can be extensive, covering things such
as immediate medical expenses, long-term care, and lost
wages. These unexpected expenses can take a toll on people’s
mental health and social lives, leading to stress, anxiety, and
difficulties in maintaining relationships due to the constant
pressure of managing these expenses. Despite the significant
financial burden, research into the financial consequences of
brain injury has historically been underexplored.
In this edition of ‘Research Spotlight,’ our goal is to highlight
existing research that focused on the financial impact of brain
injury and the challenges faced by those affected. Additionally,
we will discuss OBIA’s own research, which aims to fill gaps
in understanding and offer new insights into the financial
strain of brain injury in Ontario. Ultimately, we will emphasize
the urgent need for further research to inform policies and
practices that can alleviate these financial burdens, ensuring
better support for individuals living with brain injuries.
Existing Research & Insights
Research has previously shown that brain injuries, whether
mild or severe, can result in substantial financial hardship.
While immediate medical costs such as emergency care
and hospitalization are typically covered by Canada's public
healthcare system, individuals often face significant out-
of-pocket expenses for specialized rehabilitation, long-term
care, and other support services not fully covered by provincial
health plans. These additional costs can quickly become
overwhelming and are often just the beginning. Long-term care
needs, rehabilitation, and the costs of adapting to new living
conditions often stretch over years, further escalating people’s
financial struggles [1]. In addition to medical expenses, lost
wages represent a significant financial burden for individuals
affected by brain injury. American studies found that
individuals with traumatic brain injuries experience a higher
rate of unemployment and a reduction in income than the
average population [2], with many unable to return to work due
to persistent cognitive, physical, and emotional impairments
[3]. These financial losses, combined with ongoing care needs,
can worsen the challenges faced by individuals with brain
injuries and their families.
Unfortunately, many individuals with brain injuries also face
significant challenges in accessing the financial support they
need. Numerous personal accounts shared through Canadian
media outlets highlight how programs, such as the Ontario
Disability Support Program (ODSP), often fail to cover even
the most basic personal care costs. For example, one man
interviewed by the Canadian Broadcasting Corporation (CBC)
shared that he frequently relies on food banks to meet his
basic needs [4]. Similarly, a woman featured on Canadian
Television (CTV) News discussed the difficulties of navigating
eligibility requirements for social assistance programs, which
often resulted in delays or denials of essential benefits [5].
These challenges not only hinder people’s recovery processes,
but can also negatively impact people’s mental health, as
M A R C H 2 0 2 5 | O B I A R E V I E W
individuals are forced to manage the added stress of balancing
both their health and financial stability. Our research further
emphasizes the role that financial insecurity plays in the lives
of individuals with brain injuries.
OBIA’s Financial Impact Study
In June 2024, OBIA’s Brain Injury Speaks Stakeholder
Engagement Network conducted an online survey aimed at
assessing the financial challenges faced by individuals living
with brain injuries in Ontario. The survey gathered responses
regarding participants' annual household income, sources of
income, and their access to social assistance post-injury. A
total of 235 individuals participated in the survey. The findings
revealed significant financial hardships among this population,
highlighting barriers to meeting basic needs and accessing
support for recovery. Some of the key findings of the survey
are as follows:
• Financial Shortfall: 44.8% of respondents reported
experiencing a monthly financial shortfall over $499.
• Reliance on Informal Support Networks: 46.19% of
participants indicated they relied on friends, family,
and/or food banks to make up for their financial
shortfall.
• Food Insecurity: A significant proportion (62.66%)
of respondents reported living with food insecurity,
defined as lacking access to enough nutritious food.
• Mental Health Impacts: A majority (86.83%) of
respondents indicated that their financial struggles
had a negative effect on their mental health.
• Inability to Participate in Social and Rehabilitation
Activities: 57.45% of participants reported being
unable to engage in social activities due to their
financial situation, and 54.04% stated that their
financial situation prevented them from accessing
rehabilitation services.
• Poverty Status: On average, 37.78% of respondents
had household incomes below their region's Market
Basket Measure (MBM), a recognized measurement
for assessing a region’s poverty line.
These findings show the financial challenges faced by
individuals living with brain injuries in Ontario. Their financial
strain not only restricts access to essential needs such as
food and healthcare, but also negatively affects their mental
health and limits their participation in social and rehabilitative
activities.
The full report of this study will be released by OBIA’s Brain
Injury Speaks Network early 2025. For more information,
please contact OBIA’s Brain Injury Support Services & Network
Advocate by e-mail: braininjuryspeaks@obia.on.ca.
Conclusion
This article has highlighted the financial burden placed on
individuals living with brain injuries by discussing both existing
research and OBIA's recent findings. Previous studies have
shown the financial hardships associated with brain injuries,
including high medical costs, long-term care expenses, and
lost wages. Despite the coverage provided by public healthcare
systems, many individuals still struggle with additional out-of-
pocket expenses and need long-term financial support. OBIA’s
own research reinforces these findings, showing that financial
strain, food insecurity, and mental health challenges are
prevalent among individuals with brain injuries in Ontario. Past
and present findings stress the urgent need for more in-depth
investigation into the financial impacts of brain injuries.
To address the financial impacts experiences by individuals
with brain injuries and their families, there is a pressing need
for continued and expanded research. While the immediate
medical costs are often discussed, the long-term financial
consequences of brain injuries remain underexplored and
poorly understood. This gap in research leaves many individuals
facing not only the physical and psychological challenges of
brain injury, but also the overwhelming financial stress of
coping with long-term care, lost income, and the need for
ongoing rehabilitation. Comprehensive research into these
long-term impacts would not only deepen our understanding
of the financial strain but could also serve as a foundation
for developing more effective, sustainable financial supports.
By gathering data on these long-term financial struggles, we
can support policymakers to create more informed, targeted
interventions that reflect the true needs of those living with
the effects of a brain injury.
In doing so, we can work toward a society that provides support,
which recognizes the complex and multifaceted nature of brain
injury. This will help to ensure that the financial pressures faced
by affected individuals and their families are not overlooked.
O B I A R E V I E W | M A R C H 2 0 2 5
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Such efforts are essential in creating a community where all
individuals have access to the resources and opportunities
necessary to live fulfilling lives. ◊◊◊
References
[1] Wendling, P. (2024, May 17). Millions in lost wages for traumatic brain injury
survivors. Medscape Medical News. https://www.medscape.com/viewarticle/
millions-lost-wages-traumatic-brain-injury-survivors-2024a10009f4?form=fpf
[2] Doctor, J. N., Castro, J., Temkin, N. R., Fraser, R. T., Machamer, J. E., &
Dikmen, S. S. (2005). Workers' risk of unemployment after traumatic brain
injury: a normed comparison. Journal of the International Neuropsychological
Society, 11(6), 747–752.
[3] Yeates, G., Salter, M., & Hillier, M. (2020). Common challenges in
returning to work after brain injury. Occupational Medicine, 70(8), 550–552.
[4] Migneault, J. (2024, April 18). People with disabilities in Sudbury, Ont.
say the new federal disability benefit falls short. CBC. https://www.cbc.ca/
news/canada/sudbury/disability-benefit-reaction-1.7176838
[5] Wiens, C. (2024, June 07). Ont. woman shares challenges of living
on disability benefits. CTV News. https://www.ctvnews.ca/kitchener/article/
ont-woman-shares-challenges-of-living-on-disability-benefits/
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Helping individuals living with the effects of brain
injury achieve a better quality of life
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Support Services for Brain Injury