Left Behind: the Hidden Impact of COVID-19 on Siblings of Those with Disabilities

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This student story was originally published in blue bean‘s first print issue which highlighted the topic of learning differences. You can read this story, more never-before-seen student stories, exclusive articles written by our staff members, and media created by our staff artist when you purchase the issue here

Danbury High School students Rebecca D’Ostilio and Jenna Ferrandino have entered their senior year during the greatest health crisis of the 21st century. As a result, their college applications, extracurriculars, sports, and classes have all been disrupted similarly to many of their peers throughout the nation. Yet, the pair have an unseen responsibility that has been intensified by the pandemic: taking care of a sibling with a disability.

Both girls describe their siblings – Nicky D’Ostilio, who has down syndrome, and Jake Ferrandino, who has profound autism – as “kind” and “bright.” Still, these traits can’t overcome the ramifications of social isolation and distance learning. With Danbury High School enacting distance learning until its partial-hybrid-learning model begins on Oct. 26, the need for routine for their siblings is now being provided by the girls and their families instead of by school.

For Jenna Ferrandino and her family, distance learning has “been a challenge” since it began in March of this year. “My dad, as a special education teacher, is busy taking care of his own students… so I feel compelled to help my brother despite having my own school work to attend to,” Ferrandino explains. However, she made it clear that her parents “never expected [her] to be responsible” for Jake, and that her parents are the ones assuming responsibilities such as teaching him to set up his computer and get into his online classes. 

“Still, there are little things that I need to do to keep him on track,” Ferrandino says. “People with autism like to have a schedule, and distance learning forced people like my brother to have to adapt to a different schedule than they’re used to. This means often times I have to step in and ask, ‘Jake, what do you have to do next’ or ‘did you eat lunch yet?’”

For Rebecca D’Ostilio, whose mom is a single, working parent and whose older sister is attending college out-of-state, the amount of responsibility for her brother she’s had to shoulder has “definitely increased since distance learning started. My brother’s home without a tutor or in-person learning, so I’m expected to supervise and help with any issues he has on an educational, technical, or emotional level.” D’Ostilio admits it’s been difficult to manage her time, having to juggle when her brother’s assignments are due and when her assignments are due.

These distinctive experiences prove that not every family of a child with disabilities is undergoing the pandemic in the same way. D’Ostilio reminds everyone that wealth plays a major role in the amount of responsibility parents and siblings take on, saying “tutors and babysitters are something my family cannot afford that aid wealthier families in taking care of their kids with disabilities.” Limited care options is a consistent theme across the nation as the median household income for the over two million families taking care of a child is just under $40,000 a year.

Age is another factor when differentiating the circumstances of such families. Ferrandino acknowledges that if her brother was younger, her parents “would have had to take more time off work to take care of him.” Younger children with disabilities require more attention and care in general that distance learning is not providing, but adding a disability on top of that means they need to be monitored constantly. As a result, she believes that “schools during a global pandemic need to find a way to aid parents with taking care of younger students” who are in their critical emotional and educational developmental stages.

It is vital that schools provide in-person learning options to Special Ed students. “I understand that a lot of students with learning disabilities are immunocompromised, so it’s hard for them to go to school during the pandemic,” D’Ostilio conceded. Both she and Ferrandino were fearful early on of their siblings potentially catching COVID-19. “But schools should try to put Special ED kids back to in-person learning as soon as they can because they’re the ones who are hurting the most. Their IEPs are being violated.” An IEP or Individualized Educational Program is a written document explaining the accommodations and resources a child with disabilities will receive that a school must follow by law. Many students, like D’Ostilio’s brother, have IEPs that guarantee classes like Resource or Special Education (both dedicated to teaching Special ED students real-world skills) and one-on-one learning with a tutor. However, the pandemic has resulted in the exclusion of guaranteed resources on numerous IEPs, resulting in educational deficiencies.

“The difficult work that goes into teaching and guiding my brother has made me respect his teachers a lot more,” D’Ostilio expressed. However, she lacks the qualifications of a Special Education instructor and cannot be expected to act as both a full-time teacher and a full-time student. “My brother, like many kids similar to him, needs that visual and personalized learning that comes from a Special Ed classroom environment. Schools need to prioritize getting kids with disabilities back in school, even if they cannot get neurotypical kids back in school.” Options like in-person learning for Special Ed kids as long as they stay in one Special Ed classroom or splitting the Special Ed population into two and completing hybrid learning in separate cohorts are being proposed as alternatives to the strict distance learning that’s negatively impacting these students. 

Despite there being no replacement for in-person learning, there are policies that can be implemented to optimize distance learning environments.

In the spring, when everything was moved online, Jake was given a Google Classroom link and expected to complete certain assignments by himself, and there was really no one to help Jake through his assignments,” Ferrandino explained. The present changes Danbury High School has made to its distance learning set-up has vastly improved Jake’s school experience. “Now, Jake’s class and the rest of DHS follow a schedule on Google Meets. When Jake logs on in the morning, he gets to have some social interaction with his classmates and his teacher. He then goes into breakout sessions where he can share his screen with his teacher, and he can be prompted through his assignments.” Ferrandino believes schools should adopt similar conditions so that students like Jake who need a structured school day can receive it.

Perhaps the most overlooked educational resource taken away by the pandemic is the provision of vocational learning. Jake and Nicky are at ages where they “would be going to different job opportunities, like helping at the hospital preparing packaged lunches or restocking shelves at CTown Market.” Vocational learning provides both social and real-world skills that prepare people with disabilities for their future in the workforce and reinforces a sense of duty. Both girls expressed fears at their siblings experiencing developmental delays due to the absence of “vocational time.” While providing such opportunities may not be feasible as of the current circumstances, the consequences of being without them cannot be ignored.

Still, the two expressed gratitude for how the pandemic brought them and their siblings together rather than apart. Through bike rides, TikToks, and family bonding, both pairs of siblings simply love spending time with one another. It is evident that both Ferrandino and D’Ostilio will continue to support their siblings no matter the requirements. Not because they’re brave or are compelled to do so, but because they are incredible sisters.