LOS ANGELES -- Myla Tan is regressing. She's lost much of her curiosity, is unwilling to explore her home or flip through books as much as she used to -- and her father feels helpless.
The 6-year-old is deaf, blind in one eye and has cognitive delays, heart issues and other physical difficulties that are part of CHARGE syndrome, a disorder caused by a gene mutation. At her Bay Area elementary school, she had a one-on-one aide. At home she has three siblings and two parents trying desperately to offer some semblance of education.
"I don't feel comfortable doing this," Simon Tan said of trying to follow the directions of her professional therapists and teachers through a computer. "If somebody asked me just from a standpoint of -- are the special education services sufficient? The answer is blatantly no, in no way are they sufficient."
And Tan knows about these issues. He is a clinical neuropsychologist at Stanford Hospital. Yet like so many California parents, he is overwhelmed by the daily responsibility of carrying out his child's therapies amid coronavirus-forced school closures.
The education of some 760,000 California children with disabilities has been inconsistent at best since campuses shut down in March. Parents' worries have intensified as they see their children's hard-fought advances diminishing -- and fear that losses will be compounded with more distance learning ahead, said educators, parents and student advocates.
The state has mandated that school districts continue to provide special education to students with disabilities as required by federal laws, but has waived timelines that allow students to receive assessments and services quickly.
Special education attorneys in California say hundreds of clients, especially economically disadvantaged students and foster youths, overwhelmingly are not receiving the education or services they are entitled to, nor are students who need assessments to receive appropriate care.
"It would be a mistake for anyone to say, 'Well, we've never done this in distance learning before and we're just not going to do anything at all.' That goes against everything that we know about the guarantees that students have to receive a free and appropriate education," State Superintendent of Schools Tony Thurmond said.
Yet the personal stories of parents and educators grappling with these responsibilities reveal overwhelming challenges, failed attempts to secure help and, ultimately, the realization that in many cases, the direly needed hands-on services of therapists are not performed well through a computer screen.
"I have spent most of the summer rethinking ... how do we take these evidence-based practices in an online environment? How do we provide equitable access to the families that need it the most?" said Paul Luelmo, a professor of special education at San Diego State. "I wish I had the answers, but I really don't."