Caring for a child with special needs can be a full-time job, requiring parents to become an expert on the condition and how to handle their child’s unique difficulties and behaviours. Between this, they usually have to work their real job to earn an income, and care for the rest of the family.
Head of Alexander Forbes Health Management Solutions Myrna Sachs, said there was a need for employers to consider the unique requirements of parents living with this reality, and to assist where possible.
Zanele Shabalala, Office Manager at Alexander Forbes Health in Johannesburg, has become adept at balancing life with her quadriplegic son Banzi. The nine-year-old has lissencephaly, a rare, gene-linked brain malformation characterised by the absence of normal folds in the cerebral cortex.
The first sign that something was wrong with Banzi was when he started having seizures when he was three month’s old. While Shabalala and her husband have done all they can to assist him over the years, delayed development is one of the conditions and as a result Banzi is non-verbal, wears nappies and is tube fed.
In 2018, the Shabalala’s made a decision to put their son into the Avril Elizabeth home where he can receive around the clock care. “It was difficult, especially in the African community where it is considered as if you are deserting someone when you put them into care.” The family is still heavily involved in Banzi’s life – he comes home every second weekend and Shabalala takes him for all his doctor’s check-ups.
“Many children with special needs have frequent doctor’s appointments as well as hospital stays. These parents can struggle with frequent fatigue and work interruptions, and have to spend significantly more time caregiving than moms of children without disabilities,” Sachs said. “Time off work to attend appointments should not be a grudge, however there must be open communication between both parties and managers, should be informed well in advance of impending time off.” However, she said an employer also needed to be supportive when there was a crisis and leave without warning was required. “Working from home should also be considered to allow some flexibility and less down time, where practical.”
“As a wife and mother to a second child, I need a supportive workplace to enable me to manage the challenges of running a family which includes a special needs member,” Shabalala said. Working at Alexander Forbes Health has been helpful to her as she was able to consult with colleagues on medical issues.
“My husband is very hands on and we get help from our extended family.” Shabalala’s coping mechanisms include reading or watching TV and associating with other mothers in the same situation. She feels there is a need for improved education on disability in the workplace and that offices be designed with disabled people in mind. “Being exposed to people in wheelchairs, learning about why there needs to be ramps, why light switches should be located lower on the walls – it will all contribute to a better awareness of the disabled.”
Employers should also keep finances in mind, and perhaps assist with medical aid packages to subside costs or assist with special school fees. “Government doesn’t give a subsidy to disabled children under the age of the 18 if the parents are working, so paying for care and medical bills can be financially draining.”
It also means a lot of paperwork – and Shabalala feels companies could assist in maximising tax rebates by helping with tax returns.
Employee well-being support was crucial, Sachs said. “Employers need to ensure that they have a structure in place that allows for this support. This support is not only from a psychological aspect, but also from a legal and financial well-being point of view.” Some companies have started improving on their disability awareness in the workplace and are doing workplace audits and sensitisation training to ensure the environment is conducive for a person with a disability. “This is encouraging, however this is still in its infancy and more work needs to be done in this area.”
In closing, Sachs said employees needed to ensure that they did not take advantage of the support from their employers, “as this will in turn negatively affect future actions”.