As an occupational therapist, I have worked with acquired brain injury (ABI) survivors for almost 10 years now. I have worked with ABIs of varying types and severity and have learned much about gaps in ABI knowledge and support from the public’s perspective. For ABI survivors and their families, learning about the brain injury and its impact on their function, relationships, and well-being is often an ongoing and arduous task. Raising awareness, increasing community integration, and promoting the development of support platforms and resources are all important elements of how we can provide support for ABI survivors.
Brain Injuries Are Often Invisible and Always Unique
Brain injury is often invisible to others. ABI survivors cut across age, sex, gender, race, culture, religion, and socio-economic status. The presence of a brain injury is not always visually obvious in the way a physical injury (such as a broken leg) is. This means that anyone we know could be a brain injury survivor. Anyone we interact with could be managing an injury, and its symptoms, to the best of their abilities. A waiter who screws up our order might be dealing with attentional issues arising from a recent concussion. An individual struggling to de-escalate emotionally may be doing their best to ground themselves and manage their symptoms in the moment.
Additionally, no two brain injuries are alike. When it comes to symptoms, and the functional implications of those symptoms, each case is unique. Even when there are similarities in severity or type, each person experiences their injury differently. This means that we should not generalize or make assumptions about ABI survivors.
Separate the Person from the Symptoms
Following an injury, the survivor is often seen as a combination of both their pre-injury self and their post-injury symptoms. At times, when symptoms impact their function or relationships in negative ways, the initial response is to blame themselves as a person. Sometimes other people respond to them in the same way. This can often lead to poor self-image for the survivor, and poor perceptions of them in the eyes of their family or the public.
It is helpful for us to try to delineate between the person and the symptoms of their injury. For example, if a survivor says something hurtful or inappropriate, and we know this is not something that they would have said pre-injury, then we need to reframe our thinking. It is the injury that led to the hurtful or inappropriate statements, not the person. Altering our perceptions in this way can help maintain strong relationships and promote a positive self-image for the survivor.
Empathy is Key
Once we understand how best to perceive the actions of an ABI survivor to preserve positive self-image and relationships, we’re better able to show empathy. Showing empathy and kindness when issues arise, or when things don’t go as planned, can demonstrate that we are there to support them, regardless of the ups and downs. Similarly, if you’re a survivor, empathy towards yourself is most important. Be kind and forgiving to yourself. Know that recovery is not always a linear path.
There Are Gaps in Existing ABI Support
Most of the ABI survivors I treat were injured in a motor vehicle or workplace accident. Given the mechanism of injury, these survivors can gain access to some funding for rehabilitation and ongoing therapies. These third-party payers also recognize disciplines that are essential to ABI recovery –including occupational therapy – but may not be universally recognized by typical extended health benefit plans.
That said, depending on the severity of the injury, even third-party funding may not be sufficient for the level of care required. It is becoming increasingly difficult to access the funds required to properly care for a more severe ABI.
Further difficulties often arise in situations in which a person acquires a brain injury but does not have access to third-party or insurance funding for therapies and support. Following a hospital stay, acute rehabilitative care, and a transition back into the community, few supports are available that do not come at a cost. Our Ottawa hospital ABI inpatient and outpatient programs are some of the best in the country, but their reach into the community can only extend so far. When some survivors investigate their extended health benefits to cover the gaps in support, they are often disappointed to discover that there is little to no coverage for many disciplines essential to ABI recovery.
What You Can Do to Fill In the Gaps
There are some ways we can fill in these gaps in care for ABI survivors who need increased community-based support. Preemptively making changes to your extended health benefits and insurances may be necessary to ensure you have access to the support you need, should something occur.
Here are three things you can do to help fill in the gaps:
1. Review your Extended Health Benefits
And ensure you have coverage for physiotherapy, occupational therapy, speech-language pathology, psychotherapy, and personal support.
2. Review your Auto Insurance Coverage
In Ontario, you have an option to increase coverages for both medical/rehabilitation and attendant care support should an accident occur. This could mean increasing accessible funding for rehabilitation and support from 2-12 times more than is typically included with an auto insurance policy.
3. Donate to Local ABI Support Channels
To facilitate creation of resources and community-based care for survivors.
Below are some organizations that do just that: