Amid pandemic, young kids with special needs missing out on services

LOS ANGELES — Three-year-old Gavin Alcala was supposed to start preschool the day the Los Angeles Unified School District closed down.

Gavin has a rare genetic disorder that has caused partial blindness, epilepsy and developmental delays. Before he turned 3, the toddler, who cannot walk or talk, attended a special day care and received therapy through the East Los Angeles Regional Center. But under California’s special education system, responsibility for serving children with disabilities typically switches to local school districts the day children turn 3.

That day for Gavin was March 13, just before schools in L.A. County and other parts of the state suspended in-person classes in response to the pandemic. The closures included Albion Street Elementary in Lincoln Heights, where Gavin was about to attend the Preschool for All Learners Special Day Program.

“We kind of got stuck in limbo,” said Gavin’s mother, Melissa Alcala. “No one knew who was supposed to service us.”

Before turning 3, Gavin received occupational therapy, physical therapy, vision therapy, and speech therapy, all paid for by the regional center. Those therapies were supposed to be provided through the school district, along with preschool, once he turned 3. He also received feeding therapy through a private insurance plan, but the provider wasn’t equipped to move the sessions online once the pandemic hit.

“Now,” Alcala said, “it’s all stopped.”

Alcala is one of many parents of young children with special needs and other disabilities in Los Angeles County and beyond who have struggled to get services for their kids during the pandemic. Like Gavin, some of these children have lost supports such as occupational, physical and speech therapies because of inopportune timing. Since mid-March, California’s complex special needs care system has struggled to move children from one program to another, parents and advocates said.

For other families, the challenges are more technical. Some families lack a computer or reliable internet connection to access therapy and educational support via telehealth. There are parents who don’t speak English, which makes it hard to figure out how to access care under the new circumstances. In other cases, providers have closed programs altogether, been slow to transition to online services, or scaled back the programs they offered, leaving kids with a paltry version of the support they received before the pandemic.

Parents ‘Don’t Know What to Do Next’

Resource specialists for families with children with special needs recommended parents who are struggling to get services reach out to their local regional center or Family Resource Center for guidance. Those with children transitioning to or already in the public school system can also write to the special education director for their child’s school or would-be school and request an appointment, experts said. Additionally, the California Department of Developmental Services recently issued a waiver allowing regional centers to continue providing services to children who have turned 3 during the pandemic. The waiver expires Aug. 15.

Even when families can get therapy and developmental help for their children online, some have found the process ineffective or difficult to manage, and dropped the supports altogether, professionals working with families said. That’s especially true of parents struggling with other challenges related to the pandemic such as job loss and food insecurity, or those who have other children in the home to take care of, said Yvette Baptiste, executive director of the Eastern LA Family Resource Center, which helps families of children with disabilities in the East L.A. area connect with resources. These challenges in accessing and making use of telehealth are likely to disproportionately impact low-income families of color because of longstanding income and racial inequities, she said.

“A lot of the services have moved to telehealth, and there’s an issue with access and understanding,” Baptiste said. “Some of the parents have just said, ‘No, that’s alright, I don’t want to do that,’ and that means that their child isn’t improving in their development.”

The danger, advocates for children with special needs said, is that these kids are missing out on interventions at a critical moment in their lives. For all children, the period between birth and age 5 is a time of rapid physical and neurological development that lays the foundation for future well-being. For children with special needs and other health conditions, intervening early with supports such as socialization programs and occupational, speech, behavioral and vision therapy can dramatically improve their ability to navigate their challenges.

“The science and the research shows what the long-term impact looks like for children who are already at a disadvantage in their development and not receiving resources,” said Crystal Smith, program manager at the McClaney Family Resource Center, which is tied to the South Central Los Angeles Regional Center. “It impacts school readiness, success in being able to reach and perform to their best ability in an educational setting. It prolongs the developmental delays, and creates additional stress for the child’s family.”

For Gavin, losing all his therapies has resulted in him forgetting many hard-won developmental gains. He no longer recognizes his favorite song about bumblebees from day care. Before the pandemic, he’d been making progress learning to taste and swallow food with his feeding therapist. Now he’s having difficulty swallowing and has reverted to depending on a feeding tube, his mother said. He’s also begun showing aggressive behaviors, such as slapping and pulling people’s hair, which Alcala thinks might be a sign he needs more sensory stimulation.

“It’s frustrating,” she said. “I need a professional to guide me, to say, ‘OK, this is what you should do, this is what you should try,’ and that’s not what we’re getting right now. I’m Googling, I’m constantly contacting other parents and saying, ‘Hey, what about this?’ It’s kind of hard to not know what to do next.”

An Excuse Not to Serve Kids?

Carrie Lustig of Huntington Beach worries her son will also regress. Coby, 5, survived a stroke as a baby and has cerebral palsy, epilepsy and a visual impairment. Until last month, he received physical, occupational, speech and vision therapy online through a private school for children who are blind. That school shut down in July for reasons unrelated to the pandemic. Now Lustig is trying to get the same therapies through the public school system (the West County Consortium for Special Education), but said she’s been told that can’t happen until in-person classes resume.

Both she and Alcala said they felt the pandemic has been used as an excuse not to provide their children with needed services.

“Parents of kids with special needs, we’re very frustrated right now,” said Lustig. “We’re usually a frustrated community as it is because of accommodations and school districts, and everybody tries to fight us … Now, it’s just taken on a whole new level.”

Barbara Jones, a spokesperson for the Los Angeles Unified School District, said the district is still finalizing special education plans for the coming school year. In a statement to the school board in May, Superintendent Austin Beutner acknowledged the difficulty of transitioning students with special needs to online learning when they typically require intensive, hands-on support. Nevertheless, he said educators were working hard to create individualized education programs for online instruction for the almost 70,000 students in the district with learning differences and disabilities, especially those entering kindergarten.

“Everyone involved recognizes there’s no substitute for a classroom setting but they are trying their best because every student deserves the best possible education, irrespective of circumstance,” he said.

Meanwhile, other service providers and organizations that support young children with special needs said they’re doing what they can to adapt. The Braille Institute’s Los Angeles Center has a child development program that typically sends specialists to work one-on-one with children who are blind and visually impaired in their homes. During the pandemic, the institute has switched to online sessions, and created a series of activity printouts and demonstration videos showing parents how to work with children on their own, said Karen Nutt, director of child development services.

The McClaney Family Resource Center put together learning kits for families with young children with special needs who weren’t able to continue getting services through telehealth, said Smith. The kits include a bilingual book, toy cars, a stuffed animal, paint and paint brushes. Staff members delivered the kits along with other basic need supplies such as laundry detergent to families hit hard by the pandemic, she said.

‘Saturated With Zoom Meetings’

Engaging families remains a challenge. The Eastern L.A. Family Resource Center has moved its parent support groups online but is getting a much lower turnout than when the groups were in-person, Baptiste said. Nutt said some of the families receiving support from the Braille Institute have turned down the online sessions.

“Sometimes parents get a little saturated with Zoom meetings,” she said. “Because not only are we doing the Zoom meetings, but the occupational therapist is, the physical therapist, the infant development specialist. It gets a little tedious sometimes, and I can understand why a parent would just say, ‘You know what, I need a break.'”

Suzanne Galindo, project manager at TASK (Team of Advocates for Special Kids) in Alhambra, part of a nationwide organization that provides training and guidance to families with children with special needs, said school districts are still required to follow individualized special education programs for students. The pandemic has created an unprecedented situation, but districts are complying with state guidance to provide virtual instruction until schools open, she said.

Melissa Alcala is hopeful Gavin will be able to start preschool in the fall. She said she’s still waiting to get details from the school district. She recently learned the teacher he was supposed to have got laid off. In the meantime, she’s managed to get the regional center to pay for one hour of instruction each week with his former day care until he starts preschool.

Alcala also worries about other families in her largely Latinx neighborhood that have children with disabilities. Unlike her, many don’t speak English or know how the system for children with special needs works, she said. Some of them call her in tears asking for advice, she said.

“I can’t help but feel there’s such a disparity right now. Our kids are the last to be checked on,” she said. “Even before the pandemic they were struggling to get services, and now with the pandemic it’s even harder.”

Claudia Boyd-Barrett reported this story with the support of the Fund for Journalism on Child Well-Being, a program of the USC Annenberg Center for Health Journalism. This article was originally published by California Health Report and also ran in The Mighty and Disability Scoop.