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Education

Parents sue for medically fragile children who need distance learning

The California Department of Education is scrambling Tuesday to meet a court order protecting a number of students with special needs.

The order forces the state to provide a distance-learning option for the 15 students in the lawsuit by Nov. 12, but that hasn't happened yet.

The students are considered medically fragile and unable to return to in-person learning that could expose them to COVID-19. A San Diego student and his family are among the plaintiffs in an alleged case of disability discrimination.

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Ethan Russell, 16, is a sophomore at Patrick Henry High School in Del Cerro, although he’s never actually attended classes on campus. His freshman year was spent at home with distance learning and full special education support.

“Ethan has had 23 surgeries, 5 heart surgeries, and a heart attack," his mother Heather Russell said. "He also has cerebral palsy.”

Heather Russell advocates for her 16-year-old son, Ethan Russell, living with Floating Harbor Syndrome, Del Cerro, Nov. 16, 2021
Carlos Castillo
Heather Russell advocates for her 16-year-old son, Ethan Russell, living with Floating Harbor Syndrome, Del Cerro, Nov. 16, 2021

His diagnoses also include Floating-Harbor syndrome, a rare disease with only 100 known cases worldwide.

“Every parent wants their child to be healthy, happy and have an education. He deserves what every other child is receiving now,” Russell said.

Since the fall semester started, Ethan has not received any support because of an apparent unexpected consequence of California law. In July, the State legislature passed AB 130, which became the new law to prioritize in-person learning for all students including those with special needs.

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That left students who are medically fragile without a viable distance learning option and no support or curriculum. The choices presented by many school administrators across the state seem to be in-person attendance on campus, with the risk of exposure to COVID-19 — or staying home with no instruction.

A collaboration of legal organizations decided to represent families like the Russells, who were frustrated their children were not being given the services and education they are owed. A group of 15 California families is represented by the Disability Rights California (DRC) organization, as well as co-counsel from the Disability Rights Education & Defense Fund (DREDF) and Vanaman German LLP.

“We view this law as purely discriminatory. It discriminates on the basis of disability," said Robert Borrelle, the disability rights attorney leading the case against the state. "So what we want for these children is equal access to safe virtual instruction.”

Earlier this month, the families were granted a temporary restraining order requiring immediate virtual instruction. Borelle said that is in process at the moment. A judge will review the case Dec. 2, and that decision could impact children who are medically fragile with special needs across California.

Late Tuesday afternoon, a spokesperson for the California Department of Education provided a written statement to KPBS News which said:

“We are disappointed by the amendment to the November 4th, 2021, Temporary Restraining Order. The California Department of Education (CDE) is continuing to work overtime on this issue and to ensure that all students receive the education they deserve.

"As we have stated before, vulnerable students have been acutely impacted by the COVID-19 pandemic, and working to mitigate those impacts has been a top concern of California’s education community since the virus was first detected in our state.

The California Department of Education (CDE) issued updated guidelines and frequently asked questions for schools to clarify their legal obligations to serve students with disabilities. The CDE notified school districts of the updated guidelines.

These guidelines clarified requirements of the federal law concerning the Individualized Education Program (IEP) and outlined how parents can engage in a process with their local district to address concerns about their child’s placement and change their IEPs.

"On November 4th, the court issued an order which stated the districts were required to provide virtual instruction to the 15 students by last Friday, November 12. Nothing in AB 130 should be viewed as prohibiting a school districts’ ability to provide instruction and services under the Individual Education Program (IEP) virtually.

"The CDE has an opposition to the preliminary injunction order due on November 18 with an anticipated hearing date of December 2, 2021. We look forward to resolving this issue with the interested parties and to ensure that all students are being served in a timely manner.”

Ethan Russell sits at home enjoying time on his phone, Del Cerro, CA November 16, 2021
Carlos Castillo
Ethan Russell sits at home enjoying time on his phone in Del Cerro. Nov, 16, 2021

Meanwhile, the Russells are committed to their legal action and devoted to doing what they say is right.

“Just like everyone else, Ethan wants to be an active part of his own life and I’m proud that he will never give up,” his mother said.

This is the place to find news, information and resources to help you make decisions about the children under your care and support you in this adventure we call "parenting."