National Epilepsy Week - Bringing Epilepsy out of the Shadows
In line with the theme of this year’s National Epilepsy Week – Bringing epilepsy out of the shadows – disability equity solutions company, Progression Transformation Enablers (Progression), is committed to shedding light on epilepsy and encouraging acceptance and understanding amongst South Africans.
Justene Smith, a disability expert at Progression, says National Epilepsy Week falls between 21 and 27 June.
“We believe that being aware of and supporting people who live with epilepsy and other disabilities is an important, and often overlooked, responsibility for all South African citizens. And it starts with education.”
Epilepsy, also known as a seizure disorder, is a common condition that affects the brain and nervous system. It has been estimated that approximately one in every 100 South Africans will suffer from epilepsy at some point in their lifetime. This means that having someone who suffers from epilepsy as one of your employees or colleagues is a realistic probability and reinforces the importance of growing your knowledge regarding epilepsy and its impact in the workplace.
A Progression employee, Janet Jones*, who was diagnosed with epilepsy in 1999, provides some insight on the condition.
In your opinion, what are some important factors that employers should know regarding an employee who has epilepsy?
Jones: Employers need to know how to deal with a situation where a person has had a seizure or is having a seizure. Because a person loses control of their body when experiencing a seizure, injuries may be incurred through, for example, falling or biting of the tongue. It is important that a first aid kit is available and maintained. Having a first aid officer who has received relevant training in dealing with seizures is also essential. Employers need to know who the employee’s support system is. In my case, if I suffer a seizure, my manager knows that my mother needs to be contacted as she can then provide instructions on what needs to be done.
Does having epilepsy limit you in the workplace with respect to what you can and can’t do?
Jones: This is very industry specific. If, for example, I was working in the mining industry there would be various limitations on the tasks and activities that I would be permitted to do. The Mine Health and Safety Act states that a person who has epilepsy can’t work in confined spaces or at heights and thus provides some limitations. However, in the industry and training role I am currently in, there are no limitations regarding what I can and can’t do.
Are there certain things that trigger your epilepsy?
Jones: Triggers are unique and differ from person to person. I find that my epilepsy has two main triggers namely tiredness and stress. This is why it is important for me to ensure I get enough sleep and control my energy levels.
What would you recommend employers do for employees with epilepsy in terms of reasonable accommodation?
Jones: I feel it is important for employers to allow time for an employee with epilepsy to visit their specialist or have tests done. The employee’s specialist may be very busy and only have appointments in the morning. The employer needs to be lenient in allowing the employee time to consult their doctor when necessary.
I recently changed my medication and was hesitant to drive during the transition as this has triggered a seizure in the past. To ensure my own safety and peace of mind, my manager allowed me to work from home for a short period of time.
Do you think it is important for people who have epilepsy to disclose this information to their employer? Why?
Jones: Yes, I do think that it is very important and urge people with epilepsy to make their employer aware of this. People need to be aware of the procedure and protocol to follow when someone experiences a seizure. It can be very scary to witness someone having a seizure. If they are not prepared for it, or are unaware that the person has epilepsy, they may not know what is happening or how to help.
Justene Smith, a disability expert at Progression, provides further insight into what employers should be aware of when it comes to epilepsy in the workplace.
What would the process be when hiring someone who has epilepsy with regards to disclosure, documentation needed, etc.?
Smith: A person is not legally required to disclose whether they have a disability, such as epilepsy. It is a personal choice. An employer can include questions relating to epilepsy in a risk assessment, which needs to be conducted in certain roles and industries. For example, if a person is going to be appointed as a driver, work on scaffolding or at heights, one of the questions that can be included in the medical could be “do you have epilepsy?”
If a person chooses to disclose the fact that they do have epilepsy at the beginning of the recruitment process, you can ask them if there are any specific things that they need with regards to reasonable accommodation and if there are any known triggers for their epilepsy. This information will aid the employer in ensuring the person is integrated into the workplace successfully, as well as when making important decisions, such as what the most suitable environment for the person may be.
The employee can be asked to fill in the standard Employment Equity Declaration Form, known as an EEA1 form, which is used to confirm the employee’s race, gender, nationality and disability status.
Regarding medical documentation, there is no need for the individual to provide medical confirmation for Employment Equity reporting purposes. However, there is a section in the Employment Equity Act, which states that if there is any reason the employer doubts the legitimacy of the person’s disability, they are entitled to request evidence thereof. However, for the purposes of B-BBEE compliance and auditing, medical confirmation of the employee’s disability needs to be provided. For this reason, we recommend that if the person is open and has disclosed their disability, a medical confirmation letter be requested.
What types of reasonable accommodation could employees with epilepsy need?
Smith: This tends to be case-specific and is likely to depend on the known triggers of that individual’s epilepsy. For example, if a person’s epilepsy is triggered by sudden loud noises, they would need to be placed in a relatively quiet office. Alternatively, if heat or extreme temperatures are a trigger, the employer would need to ensure that the environment in which the employee is working has an air conditioner or adequate ventilation systems in place.
For people who access medication through government services, it is important for employers to be aware that these services will only provide 30 days’ worth of medication at a time. This means the next appointment issued to the employee for the collection of the medication may fall on a week day and could result in a day’s absence from work. Because of this, we generally recommend that, for individuals who make use of government services to manage their health appropriately, they are given one day of health management leave per month as part of their reasonable accommodation.
Of course, this leave needs to be validated by either a doctor’s letter or a stamped letter from the clinic, confirming the individual’s attendance.
What are some important factors to consider when ensuring that all employees, including those who have epilepsy, are accommodated in the work space?
Smith: Every organisation needs to ensure they have appropriate health and safety measures in place, which should include a qualified first-aider. Often, when I inform employers and/or HR staff that people will not always disclose their epilepsy, their responses are similar: "What am I meant to do if the person has a seizure at work?” This is where the organisation’s health and safety policy will come in.
Like many other organisations, we often have clients who attend meetings at our premises. If one of these clients were to have a seizure while in a meeting, the first-aider should know what protocol to follow. In instances like this, it is better to be proactive rather than reactive.
Thus, providing appropriate first aid training is one of the things employers can do to ensure that all employees are accommodated in the work space.
Conducting risk assessments is also important. Employers need to determine in which areas there are risks, such as working on ladders, scaffolding or at heights. This would help them determine suitable roles and work environments for people with disabilities.
Where can employers and employees find more information on their rights and responsibilities regarding the above?
Smith: In most instances, epilepsy falls under the disability sector and is thus a part of the Employment Equity Act. This Act protects people against discrimination in the workplace and can be used to gather more information around disability in the workplace.
In addition, the Technical Assistance Guidelines on the Employment of People with Disabilities is another piece of legislation that accompanies the Employment Equity Act in guiding employers on how to best manage disabilities in the workplace.
Our Constitution provides valuable information regarding a person’s rights and can also be consulted in this regard.
There are also various associations for epilepsy, such as Epilepsy South Africa, which assist and inform people of their rights, safety in the workplace etc.
Epilepsy South Africa can be contacted via email at info@epilepsy.org.za or you can visit their website at www.epilepsy.org.za/
*not her real name
