One parent’s post-pandemic hopes for children with disabilities
The barriers to education and healthcare that 13-year-old JR, who has an intellectual disability and a severe seizure disorder, faced in the Philippines
Between fractured learning routines and prolonged periods of isolation, it’s no secret that the last two years have been tough for children.
For 13-year-old JR, a keen explorer of the outdoors who also has an intellectual disability, COVID-19 restrictions left him with few places to go. “During the lockdowns he couldn’t go out… just around the house as there was police and barangay officials patrolling the streets. And it was a struggle when he was cooped up in the house as he would start throwing tantrums,” explains Maricel, JR’s mother.
JR lives in Baseco with his mum, dad and two older brothers. Life in lockdown for JR alternated between online classes and activities that his mum would find to fill his spare time. “JR has a lot of energy so [during lockdowns], besides the singing, I tried to keep him busy and active with colouring books and games,” she says. Though she explains it got difficult as some of the strictest measures lasted for over a year in parts of Manila.
Access to medical treatment during the pandemic was also a lot more difficult. At just one-month old, JR suffered a hematoma that resulted in him developing an intellectual disability and a severe seizure disorder that, if untreated, leads to strong seizures multiple times a day. The family lost a source of income during the pandemic, making it more difficult for them to afford JR’s medication. Without it, JR had many scary seizures where his entire body would seize up.
Though his family were able to continue online medical consultations, it was harder for the doctor to accurately assess JR’s health from video calls. The limited access to healthcare also meant that JR missed an important appointment to see how effective his medication is for alleviating his seizures – a procedure his family can no longer afford.
The pandemic has highlighted an already existing gap in access to essential services that children with disabilities face. Maricel notes that children with disabilities do not receive financial support for their medical costs in the Philippines (there is currently only a scheme for persons with disabilities above the age of 18). She also highlighted the importance of ensuring that children with disabilities have better access to mainstream education systems, particularly for children who are unable to travel far.
For now, JR and his family continue to lean on their community for support. “JR also has really good friends who take care of him. Even if he gets a seizure outside, they know how to deal with it and help him while one of them will come to fetch me. They lie him down and support him, so he doesn’t fall down during the seizure and hurt himself.” Maricel hopes that her son will gain better access to the essential services he and every child needs to thrive.