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Families of at-risk children have been unable to find a balance between safety and education this autumn, with remote learning options restricted, little known, and difficult to access

Families of at-risk children have been unable to find a balance between safety and education this autumn, with remote learning options restricted, little known, and difficult to access

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Bethany Van Delft poured her heart out every day in September about her daughters education. The 9-year-old, known as Lulu, longed to go back to the Henderson Inclusion School in Dorchester, her second home since she was 3, where loving teachers assist her in keeping up with her class. But her previous history of severe respiratory illness, a common problem for people with Down syndrome, makes in-person school too risky, according to her mother, until the little girl is vaccinated.

It took her family weeks to find a safe environment for Lulu to continue learning. She missed a month of fourth grade as they struggled to locate and access the states home-based learning option for medically at-risk children, the only option available to keep her safe at home, yet still connected to her school, under the State s stringent ban on remote education this fall. She hadn't yet begun receiving instruction as of Friday.

Meanwhile, another Boston mom is mumbling in Mattapan. Axel Ramon, 15, was hesitant to return to his high school, Boston International Newcomers Academy, because of health concerns resulting from his childhood history of brain cancer. Ramon, who emigrated from the Dominican Republic three years ago in search of better medical care for her son, does not speak English. She never heard of a remote option. And so she sent her son to school.

She stated in Spanish, If they had offered it, I would have taken it. All they said was that we had to go back in person, he added.

How to balance their children's health and education are increasingly being faced by a number of families across the country and the nation as the school year approaches. Some, such as Ramon and Van Delft, faced delays and obstacles in identifying online options for vulnerable students, or never knew about those options.

Others say they feel a sense of underlying concern for their at-risk children and their safe return to school, with child vaccinations still unavailable and school mask mandates in place. State Education Commissioner Jeffrey Riley said in August that he will seek off ramps to masking in schools; parents have filed multiple lawsuits seeking an end to the requirement.

Behind the states school masking policy: a collision of science and politics.

According to state data, a relatively small percentage of the states 920,000 public school students have tested positive for coronavirus so far this fall: between.2 and.0025 percent. While children have been infected at higher rates than adults in recent weeks, because they lack access to vaccines, the vast majority of people experience mild symptoms.

Even a minor risk is inadmissible for parents whose young children are at greater risk of life-threatening complications.

The view is that All children do better in person, and most children dont get COVID,'" Van Delft said. So what that means is, my kid doesnt matter.

Lulu was granted remote instruction under the states medical exemption two weeks ago, but she still does not have a tutor, according to her mother. Van Delfts 5-year-old son, who is not medically vulnerable, misses kindergarten to ensure he doesnt bring the virus home from school to his sister.

He is bored and sad a lot, his mother said. But he is fortunate in one way: because of his young age, if a permanent loss of prestigious Boston placement is not imminent, because the school has embraced inclusion in its classrooms. Older students who were confined at home may be found truant and forced to give up their placements.

This isnt like last year, when COVID took control of our lives and forced very difficult decisions, said Van Delft. They dont know us, they don't understand the sacrifices we have made and will continue to make to keep our children healthy and happy, but they are making this decision for us, she added.

Van Delft helped start MA Parents for Remote Learning Options, which is advocating for greater remote access to school until children under 12 can be vaccinated. By the years end, a vaccine for children ages 5-11 is expected.

For most of the last school year, state leaders allowed local governments to develop their own pandemic learning plans, including online options for all families concerned about COVID-19 exposure in school buildings. Even after Governor Charlie Baker ordered all school buildings to reopen for full-time learning last spring, districts were able to maintain a remote option.

This school year, the state took a much tougher stance, preventing districts from providing'standard remote learning' to all students. Through a program known as Home or Hospital that predates the epidemic, the government maintained snazzy pathways for temporary home-based learning for children with medical conditions, with oath from docs.

Massachusetts was among a few states to eliminate most remote schooling, described by Baker as removing an ineffective method of education.

Baker stated in August that "were perfectly positioned to ensure that kids and adults are safe when they return to school."

Were being set up for failure: Massachusetts hard line against remote learning this year has left some families feeling hopeless.

Van Delft, a comedian and storyteller, and her husband, Jayme Moffi, who works in technology, only recognized posed hazard to their daughter when they visited her school before Bostons school reopening and saw the cafeteria where she would eat lunch with other unmasked students, as well as the mask break area with no windows.

They recalled four horrifying nights in November 2019, just before the outbreak, when they slept beside Lulus ICU hospital bed, watching her struggle to breathe, her temperature rising to 104 degrees as she battled an acute respiratory virus. She missed five weeks of school altogether, and spent two more months recuperating.

When COVID-19 shut down schools statewide in March 2020, she had been back at school for just a month.

Van Delft recalls that her doctors advised her, Just make sure she doesnt get it, as he recall.

When it became apparent this summer that Lulu couldn't go to school safely, with no vaccine for kids and escalating variants, her parents frantically pursued alternative approaches. But the "Home or Hospital" plan, they added, was difficult to locate and never presented as a clear, feasible solution to their problem.

State education leaders have said they asked school districts to make available the option to all families, and a spokesman for Boston Public Schools claims the district did so, with information on the topic included in 'A Back to School Guide' sent to families in 10 languages on Sept. 2. Weekly newsletters have included links to the guide. However, to get to detailed information on the medical option from the newsletters, multiple clicks are required, and a family update letter sent home on Sept. 30 failed to mention it.

Even families like his, whose children have longstanding medical vulnerabilities and special education plans, didn't get a dedicated message about the medical option, according to Roy Karp, of 'Lucy,' s daughter with pulmonary illness due to her premature birth. Though he and his wife are both lawyers, skilled in research and advocacy, Karp said it took them weeks to discover that the option exists for both children who are currently receiving medical treatment at home or in the hospital and for others, like his daughter, who has documented vulnerability but no immediate health crisis.

The way it was presented in public meetings and materials made it seem like a very restricted exception, only for children who are homebound or in the hospital, he added.

Boston students see little evidence of federal recovery money. I was expecting a plan:

According to a spokesman, less than 100 Boston students have accepted home learning through the medical option, and less that 100 have signed up for the option. The school enrolls about 50,000 students per year. Medical experts said it is difficult to estimate what percentage of school-age children are medically vulnerable to COVID-19. Dr. Lloyd Fisher, president of the Massachusetts chapter of aapd, said only a very, very small number of children will need remote learning, given current vaccination and infection trends.

For any concerned parent, the first step is talking to their care team, who can help put things in perspective, said Fisher, a practicing pediatrician in Worcester. He added that rates of pediatric hospitalization remain low, and that transmission in schools appears to be limited.

Ramon, the mother who was unaware of the medical option until a reporter explained it, said she worries constantly about her affable teenager, who is vaccinated but has anxiety and disabilities linked to his previous brain disease. She also knows that he learns much more easily in person and that keeping him at home would not guarantee his safety since his brother, a healthy fifth-grader who is too young to be vaccinated, would be excluded from the remote option.

(Boston Public Schools spokesman Xavier Andrews said the medical reasons for remote learning may include high-risk family members, if verified by doctors.)

Roxann Harvey, a member of Bostons SpEdPAC, which advocates for students with special education needs, said the group is looking into the quality of home instruction to identify gaps and inequities. We must address it if the Home or Hospital program isn't working for our medically complex special education students who cannot be seen in person because of the health risks they pose, she said.

Karps daughter was able to connect with her classmates for the first time on Zoom last Friday, drawing rainbows with colored pencils while talking with friends.

Lucys first day of Second Grade was today, her dad wrote in a post on Facebook. Itr been almost two weeks since the beginning of October, but TODAY was Lucy's 'first Day' of School, he wrote. THIS is what we have been fighting for... to be honest, it really shouldnt have taken this long.

Jenna Russell can be reached at Follow her on Twitter @jrussglobe.

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