Co-authored by David MacDonald and Lucie Saint-Phard
In 2010, Lucie received the news no mother ever wants to hear – her two children, Kalob and Jakin, then aged 3 and 4, were involved in a serious car accident, suffering traumatic brain injuries. Their injuries, eventually deemed to be catastrophic, continue to require intensive care and rehabilitation supports.
However, that’s not how it all started out. For the first year and a half, Lucie struggled without the help of her first lawyer coordinating an experienced acute trauma rehabilitation team.
That’s when Lucie approached Thomson Rogers, working with David MacDonald to pursue and obtain the treatment, rehabilitation, care and ongoing payments her children’s losses need to help them progress.
With more than 10 years of caregiving, Lucie has unparalleled insight into the realities of the rehabilitation process. To mark Brain Injury Awareness Month in Canada, Lucie joined us for the 16th Thomson Rogers webinar, Caregivers’ Needs When Navigating Acute Trauma: A Legal and Parental Perspective, sharing her experiences.
We hope her experience will prove useful for parents, caregivers, rehabilitation teams and lawyers alike.
Lucie has provided her Top 10 things parents of children with brain injury and PTSD should below:
#10 – Importance of Finding the Right Team From the Start
The first steps after any accident are the most crucial – not only from a legal standpoint, but for recovery too. You need a legal team that can protect the needs of the survivors. You need your trauma lawyers to:
- Develop a plan that addresses survivors’ medical needs and medical expenses
- Prepare a timeline that covers the initial phase of recovery (<2 years), reaching stability (2-year mark), and continued rehabilitation (2< years).
- Connect survivors with experienced healthcare professionals.
- Build a rehabilitation team that is committed to the needs of the survivor
- Protect caregivers and survivors from unfair scrutiny in the insurance/legal process
#9 – Listening to Your Client’s Concerns
Catastrophic injuries, especially traumatic brain injuries, are complex and manifest differently in different people. Survivors are living inside of their injury and it’s difficult for survivors to know 100 percent objectively what has changed and what needs support. That’s why lawyers need to listen closely to what the caregiver/parent is saying. Equally important is what is not said.
This means asking the right questions, not going through the motions, not using a template approach; but getting to know the individual and using many years of experience helping brain injury survivors and their families meet caring, experienced rehabilitation experts to pave the way forward, listening closely every step of the way. Parents may not be familiar with legal and insurance processes, but they still understand the survivor best.
Over time, caregivers will become familiar with technical concepts, but help us to learn the language of benefits, compensation and rehabilitation especially in the beginning.. One good way to bridge the gap in communication is using anecdotes and examples, which can be powerful allies in building an accurate picture of what is happening in the life of the survivor and helps all meet the needs of the survivor.
#8 – Goal-Oriented Team Meetings
It is very helpful for caregivers/parents to know three things from each rehab specialist:
- Goals to meet initially
- Next set of goals
- Long-term goals.
For each, stick to 3 to 5 goals per area or else you can confound the recovery agenda and inundate the caregiver. Goals should be accompanied by an action plan for everything – even if these are simple action items and to-dos in subsequent meetings.
An explicit goal list ensures the whole team is on the same page (not something that can be taken for granted). It also tells the caregiver/parent that they are being heard and can trust the team to understand the evolving needs of the survivor.
#7 – Finding Comfort in Knowledge
“Caregiving is not a choice” and caregivers are thrust into an unfamiliar role suddenly – faced with unfamiliar challenges and the evolving medical and care needs of survivors.
It’s why it’s essential for rehabilitation teams to provide and propose learning opportunities like:
- Conferences (like Back to School)
- Support groups
- Courses (like the Brain Basic Training Program)
Book recommendations, apps, and websites are great for filling in the gaps in knowledge, and can supplement rehabilitation professionals and caregivers’ efforts. Technology, evolves fast and even tools like Google Home, new smart pens, and apps can help scheduling to help the team and family work together and improve treatment compliance.
[Thomson Rogers and the PIA have long held our annual “Back to School” conferences, bringing together survivors, caregivers and ABI specialists from different fields. Unfortunately, we had to postpone them in 2020 and 2021, but look forward to convening again in 2022. You can learn more about the conference on our website.]
#6 – Understanding and Defining the Roles of a Support Team
The support team is a critical part in the recovery process – but one that can be quite confusing for caregivers and survivors. It takes time for a caregiver/parent to understand all the roles, importance of team members and required interventions.
There is the case manager who is the point person for the survivor: advocating, researching the best medical and rehab providers, and much more. They also go through the trial and error process of identifying Rehabilitation Support Workers (RSW) and Personal Support Workers (PSW), both of which provide active, personal and individual centred roles for survivors.
Fortunately, Lucie and her children had the pleasure of working with an incredibly devoted support team. Even so, it was a while before she knew exactly who – SLPs, OTs, RSWs, etc. – did what.
Unsurprisingly, there are times when there is friction between team members. In that case, the case manager can step in as the tie-breaker – which only highlights the importance of their role.
Rehab teams are not static – team members may join and leave abruptly as time goes on. Don’t underestimate the impact that has on survivors (and caregivers) as team members will invariably become pillars of emotional support, sounding boards for next steps and valuable sources of information.
Most caregivers/parents just want to know how to be most supportive and helpful, and a positive relationship with the rehab team can greatly improve trust and collaboration.
#5 – Self-Care and Resilience
The rehabilitation process places enormous requirements on caregivers and survivors – with regular team meetings, goals to meet, and endless coordination. So much so, the caregiver and natural family unit can suffer in the recovery process especially when they are thrust into roles which are best left to the professionals.
It is essential to have therapy breaks for both the caregiver and survivors, such as reducing supportive therapies in the summer or during school breaks to let the survivor and family recharge from the daily therapy engagement, which is like a job of its own. Days without team members, just like weekends, help survivors and family members refresh and that way we can better resume pursuing the therapy supported goals to help meaningful lives develop with scaffolding from the team. Short breaks help the family be itself with no expectations, and have real parent-child relationships.
Times like these also break up the recovery period, letting caregivers celebrate milestones and reflect upon how far they have come.
#4 – Building a Supportive Environment Around the Survivor and Providing Scaffolding for Success
A survivor will need to overcome endless and ongoing challenges to function within their environment. It’s the job of the rehabilitation team and caregivers to build a protective scaffolding around them that enables this – after all, that’s why it’s called the ‘support team’.
- Finding the right aid and/or strategy to promote growth and less dependence
- Providing recommendations on how to adjust the support system to best accommodate survivors as their needs evolve
- Ensuring an environment that caters to evolving needs
- Adapting and modifying plans that lets them pace themselves and gives them time to recharge
- Helping develop good and effective work habits, rather than just focus on a ‘grades’’ at school
- Teaching time management skills to let them plan and function in a way that promotes more independence
#3 – Importance of compensation
Compensation in the event of a catastrophic injury serves a very simple purpose – to give the survivor the ability to recover as much as possible on their own terms. But the word ‘compensation’ doesn’t appropriately capture the breadth of what a caregiver is expected to do.
The legal team must make sure there is a flow of support to build a strong support structure around the survivor. As David describes it, “letting survivors put another brick in the wall of their recovery themselves, rather than having someone else do that for them.”
That means exploring insurance claims, legal options, government funding, and more. It also means receiving funds, investing funds, keeping receipts, recording expenses, filing taxes, and so much more. Some specifics the legal team must guide a caregiver through are:
- Understanding how to use rehab funds for their intended purposes (caregivers naturally tend to focus on saving funds when they are worried about meeting future needs)
- Working with the Children’s Lawyer and passing of accounts. That’s vital for helping caregivers track and document information. It also means providing recommendations and representation to support parents
- Providing examples or ways to understand and record things like expenses, how to get reimbursed, how to file taxes, claim disability tax credit, and identify tax-free saving plans
- Guiding caregivers through the process of opening an account tax-free that reflects the settlement accurately
- Recovering past and future healthcare costs by helping caregivers understand what treatments are funded and what must be claimed
- Explaining Respite – a government of Canada program that’s designed to give caregivers some time-off
These aspects are where an experienced legal team can really support caregivers. There are so many aspects that caregivers/parents encounter for the first time that all advice is helpful. Even simple things like providing the name of banks and referring them to people who know how to handle these funds can go a long way.
#2 – Legal Elements: Language and Communication
Caregivers are faced with a deluge of information – for instance a raft of forms (OCF 6, OCF 19, OCF18, etc.) – and a crash course in the legal process. You are expected to understand things like accident benefits, tort, discovery, capacity assessment, care cost analysis, and consent forms.
Trauma lawyers should be careful that they don’t take for granted the caregiver will understand all these concepts. That’s where providing information simply – verbally and written down – can be very helpful, especially after meetings, to help guide the way forward.
But, more difficult than legal information is the introduction to competing goals.
The rehab team – entrusted with the recovery of the survivor – is, ironically, not your ‘friend’ even though they and you want to make the best choices for injured children and survivors. Caregivers are constantly analyzed and documented as part of a process to evaluate how everyone can best support severely injured children.
Ideally, rehab team members should be respectful of privacy and focus on compiling data to best treat the catastrophically impaired survivor. But don’t be surprised by unwarranted scrutiny into past personal and financial circumstances. That’s why it’s essential to have strong legal representation, someone batting for you and the survivor.
In the case of parent-caregivers, another concern is if rehab team members overstep parental choices. In that case, it may be better to remove team members, rather than confuse the survivor with competing expectations and goals.“If your vision is different from team members’, figure out what is the best vision for the survivor and find people who support that,” says Lucie.
#1 – Date of Loss
TBI rehabilitation can be a decades-long process – with pediatric TBI survivors continuing to grow into their disabilities until their midlives.
It’s why it is so important to acknowledge the Date of Loss – the day when survivors, caregivers and family members were changed, when everything changed. It is an extremely emotional day for caregivers and a reminder that we made it through one more year.
Make it a point to reach out to caregivers on that day, not to talk about the “file”, but as a reminder that “we’ve got your back”. That day is more important than birthdays and anniversaries – and a card, a call, or chocolate will go a long way. Although we can and must look forward, we must not forget what happened. Thank you for all of your wisdom, support, guidance and patience with us on our new life journey!
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