RARE Daily

The Children Who Were Overlooked

March 25, 2020

When the COVID-19 pandemic began to shut down New York City, Luke Rosen and his family decided to take a friend up on an offer to use his home in Amagansett, a small town on the eastern end of Long Island.

Rosen’s daughter Susannah, who is 5, has a rare neurodegenerative condition that among other things leaves her immunocompromised. Since the schools were closed, they thought it would be safer to take her outside the city and the spacious home would give them more room to stretch out for an extended sequestration than the confines of their apartment.

Though public institutions may not have been prepared for the massive dislocation the pandemic would create, they have sought to move quickly to adjust to the disruptions. For instance, for children from under-resourced families, schools are an important source of meals providing breakfast and lunch, and efforts were made to ensure kids in need continued to have access to meals.

One group of children who seem to have fallen through the cracks created by the pandemic, though, are children with complex medical conditions who rely on schools for ongoing physical, occupational, visual, and speech therapy.

These children have detailed individual education programs that are developed in conjunction with their school system to address their needs. But when the New York City schools shut down, Rosen, who is founder and chair of KIF1A.org, said there was no plan put in place for how to meet the needs of children who relied on the daily meetings with therapists.

“I realize there’s nothing people could have done to stop this horrible situation and prevent it, but when these executive decisions were made, there was an entire group of people who were left out of consideration and proper planning, and that was children K-12 who have significant medical complexity,” Rosen said.  “Many of the them have rare genetic disorders that people don’t know enough about to cure or to treat, but what they do know as long as we keep doing the therapy, they will keep moving along while we are trying to find that treatment.”

Now, the concern is many of these children are at risk for losing basic abilities they have struggled to develop and maintain. Rosen likens it to a highway that needs to be well travelled to be maintained. If these lanes go unused, they begin to fall apart.

In the case of Susannah, who had 25 different therapy sessions a week, Rosen and his wife Sally have been trading off working with her, overseeing their son’s schoolwork, doing their day jobs, and maintaining the KIF1A.org foundation. They have been able to get a plan from Susannah’s therapist and connect with her through video conferencing for guidance while working with their daughter.

Rosen said they are fortunate because they have been able to maintain contact with Susannah’s therapist. Between Rosen and his wife, they can give their daughter the time and attention she needs. Other families, he notes, are not as lucky.

For instance, Rosen spoke about one woman he heard from in the borough of Queens who has been unable to reach two of the therapists who work with her son at school. She has to continue working outside the home and the child is left with his grandmother, who is not familiar with his daily routine and is without any lesson plan to guide her.

“There are some very under-resourced parents, single parents with multiple kids. Most kids lose all of their resources and they don’t have the luxury of having very present family members,” said Rosen. “Those kids are in great harm.”

Rosen understands the magnitude of the crisis in New York City. Hospitals there are struggling to find basic supplies to meet the needs of health workers and patients on the front line of the pandemic. But he doesn’t understand why the city was able consider the need for childcare at schools for first responders and meals for children from under-resourced families but didn’t make a plan for children with complex medical needs.  

“Those are important things, but at the same level of the need for attention are special care needs kids in therapy,” he said. “There are people in our community who got overlooked.”

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