Since the outbreak of the coronavirus, it’s been clear that the best way to avoid person to person transmission is by social distancing. However, parents and caregivers of children with special needs are going through a different kind of challenge since their children require assistance with their daily tasks.
According to Fredrick Beuchi, an Epilepsy Activist whose small sister became epileptic after suffering cerebral malaria when she was only two years old, says they have tried their best as a family to explain to her what’s happening in the world.
“My sister who’s 14-years-old now has a speech impairment, so we have tried to demonstrate how to wash hands with soap, sanitizers and insisting that she has to stay at home. She doesn’t understand why everyone is at home and why they are wearing masks. We got her masks after she saw my other sisters with them, and she gets so excited every time she wears one, thinking it’s a fashion accessory.”
It has been a challenge for children with special needs, most of them wondering why they can’t play outside and not go to school.
Founder of Andy Speaks 4 Special Needs Persons Africa Sylvia Mochabo, says that apart from the children and adults with special needs experiencing major challenges during this pandemic, parents and caregivers are also battling mental health and anxiety, since the children are experiencing heightened meltdowns and irritable coping behaviors as they normally thrive on routine.
Sylvia explains that limited access to medicine and health centers is also another challenge since children and youth with Epilepsy have no access to their daily seizure control medicines, fearing that the uncontrolled seizures can cause brain damage and death.
“Prices for these vital meds have been hiked and parents cannot afford them. Many families have had to choose between buying medicine and buying foodstuff. We have hospitals that have been turned into Covid-19 screening centers and no alternatives have been given to parents who depend on NHIF support.” explains Sylvia.
She also explains that the government doesn’t prioritize children with neurodevelopmental disabilities (NDDS). No learning plans have been made for children with NDDs. “Parents lack the necessary skill to teach a special needs child especially those with learning disabilities.
The break from school was abrupt and parents cannot follow through or continue with the Individualized Education Program (IEPs) for special needs children plus not many schools adhere to this vital detail.”
The Government through the Ministry of Labor & Social Protection and the National Council of Persons with Disabilities (NCPWD) has a programme that provides cash transfers to people with severe disabilities, vulnerable, orphans & the elderly (Inua Jamii).
However, according to Sylvia, most neurodiverse persons are yet to receive cash transfers.
An official from the National Council of Persons with Disabilities said that the cash transfer is only to persons with severe disabilities, those who cannot move, talk, or feed themselves.
There is worry that it may be hard to diagnose children with neurodevelopmental disabilities with Covid-19 especially if they are nonverbal and so cannot say what or where is hurting. There is also fear that a child or an adult with disability who is found to be Covid-19 positive may be separated from their parent or caregiver which would raise anxiety and depression to both and treatment efficiency may be lessened.
Sylvia wonders if in the case of isolation whether the government is prepared to have both the child and caregiver as the two are mostly inseparable and a change may deter the treatment process.