Most parents are deliberating whether or not to send their children to school but such a decision is an even more difficult one for parents of children who are medically complex and more in danger of complications from illnesses.
It is the right of all children to be provided with an education that is tailored to their needs. With the arrival of COVID-19 restriction measures, however, most children with IEPs (individualised education plans) have had significant disruptions in these plans. Needs were often not met, even for those children who attend schools that have provided full online services.
There are some things, like one-to-one support, that cannot be translated virtually. There is no social distancing for children who need active help throughout the day.
In addition to missing out on several medical care and therapy services, parents are also concerned about the social impact for their child of being isolated from friends. By not having peer models, their social and emotional development is also being affected.
There is no social distancing for children who need active help throughout the day
Disruptions in access to tailored education and services have led to regression and loss of precious milestones and skills that had been gained after months or years of hard work. The stress that most parents have experienced or are currently experiencing is exacerbated for parents of children with more complex needs, who often require to balance being teachers, caregivers, employees and advocates. Many feel isolated and helpless while trying to ensure that their children receive what they need.
Nearly all families with young children must navigate the tension of deciding whether to send their children back to school but, for some parents, this is more complex. To protect their children, some families have adopted stricter social distancing, while others are willing to send their child to school but are worried that, in an atmosphere of reduced social interaction, their child will not be gaining much, while the social gap grows.
Deciding whether or not to return to school is an extremely personal decision that takes into consideration various factors, such as measures taken by the school, infection rates, a child’s regression rate and the vulnerability of the child and other members of the household.
The truth is that some children are always at high risk, even without COVID-19, because of other infectious diseases such as the flu.
This year, there is the possibility of remote learning, which eases the worry for some. For some children, however, distance learning does not work and their parents fear that regression is worse than the risk of infection.
Some children are unable to social distance and protections that may work for other children might be a challenge. There is no perfect solution for the complex social, medical and academic needs of these children. Different voices permeate and, whatever is chosen, the full needs of the child are not addressed.
As these parents wrestle with the choice of whether or not to send their children back to school, it is essential to ensure that children with disabilities and complex medical needs are not left behind. Services should be provided to children who need them most and whose lives could also be forever altered by not having them at this critical time.
Karen Buttigieg, Committee member, National Parents Society of Persons with a Disability