Thank you, Mr. Chair.
Good morning. I would like to thank the HUMA committee for investigating the needs of people living with episodic disabilities and inviting me to participate today. I will be speaking primarily about epilepsy, but many of the issues I'll mention are common to episodic disabilities.
Epilepsy is a brain disorder characterized by recurrent seizures. Seizures can take a number of forms depending on the person and portion of the brain affected. They are typically treated with medication, but other treatments such as surgery and diet may also be used if necessary, depending on the seizure type.
More than a quarter of a million Canadians live with epilepsy, approximately 30% of whom do not have effective seizure control. Beyond the seizures themselves, people living with epilepsy are profoundly impacted by the psychological, social and personal effects seizures can have. Rates of mental health issues and unemployment are both higher among the epilepsy population. Feelings of fear about when the next seizure might come and loss of independence are common. Side effects from medications necessary to control seizures include impacts on mood, behaviour, sleep, concentration, memory and energy.
Epilepsy is a truly episodic disease. Seizures themselves do not occur on a fixed schedule. When seizures do occur, they typically last only a few minutes followed by a recovery period, and do not necessarily require a hospital visit. They can significantly disrupt, or only temporarily interfere with, a person's school or workday. The impact of epilepsy on employment often has less to do with a single seizure and more to do with how frequent the seizures are, or the psychosocial challenges affecting the person's ability to function.
People living with dozens of seizures per day would have a very difficult time remaining employed. Others with less-frequent seizures and a supportive working environment could have minimal disruption to their employment. However, for many living with epilepsy, the reality falls somewhere in between. People can go for days or weeks between seizures, but then have several in a short period of time. Others can have them on a frequent but unpredictable basis. These situations can be physically and emotionally trying for individuals.
Beyond the seizures themselves, the mental disruption to cognition and memory that can accompany having frequent seizures is very real, as are medication side effects such as behavioural changes, sleep disruptions, lethargy and drowsiness, impacting the capacity for employment or limiting the amount of work a person can do. Triggers, those things that are likely to make seizures come about—such as stress or long working hours—often lead to an increased likelihood or frequency of seizures for people with epilepsy, compounded by many people not wanting to disclose the condition to their employer for fear of losing their job.
Comorbidities, those other conditions that have higher than average prevalence among people living with epilepsy—such as mental health issues—further exacerbate these challenges. In some cases, particularly if the epilepsy diagnosis happens when the individual is a child, parents' lives can become significantly disrupted as well. Having to bring children home from school following a seizure and the other challenges of supporting a child with a serious medical condition can easily pull a parent out of the workforce.
All of these facts can have significant effects on the ability to work, beyond the relatively brief amount of time that someone is having a seizure and needs to recover afterwards. As has been noted by others, Canada's social safety net too often defines someone as disabled or not. It considers a disability to be temporary or permanent, but not episodic—someone can or cannot work. Epilepsy simply does not follow that kind of pattern.
The CPP disability program does not have the flexibility to support repeated but not permanent interruptions in the ability to work. Further, it requires a history of employment so that minimum CPP contribution levels qualify an individual for benefits. In effect, only those individuals who have continuing and severe epilepsy, and who have been able to work for a significant portion of their adult life immediately before the onset of seizures, will qualify.
A person living with epilepsy may well be impacted by repeated interruptions to their employment over the course of a year, but the relatively short period of interruptions would not qualify them for EI sickness benefits, even though the combined effect might be comparable to someone who has had their employment interrupted enough to qualify for the program. Those applying for the disability tax credit often have a difficult time articulating how the effects of epilepsy and other comorbidities and the episodic nature of the disease have a very real impact on their daily lives, and so do not receive the credit.
Creating a more flexible definition of disability to include episodic disabilities—either with partial ongoing coverage, or with a new category for such situations—would have a significant impact on the lives of people with poorly controlled epilepsy and their families.
It is our hope that the government will review and update the criteria for such programs. Thank you.