CASTRO VALLEY, Calif. — Four-year-old Ahmeir Diaz-Thornton couldn’t sit still in class and rarely ate his lunch. While his preschool classmates spoke in perfect sentences, Ahmeir had trouble pronouncing words.

Ahmeir’s preschool teacher relayed her concerns to his mother, Kanika Thornton, who was already worried about Ahmeir’s refusal to eat anything but yogurt, Chef Boyardee spaghetti, oatmeal, and applesauce. He also sometimes hit himself and others to cope with the frustration of not being able to communicate, she said.

Thornton took her son, who is on Medi-Cal, California’s Medicaid program, which covers low-income families, to his pediatrician. Then he was evaluated by a school district official, a speech therapist, and the pediatrician — again. Along the way, Thornton consulted teachers, case managers, and social service workers.

Ten months later, she still doesn’t have an accurate diagnosis for Ahmeir.

“I felt like I failed my child, and I don’t want to feel that,” said Thornton, 30, who has been juggling Ahmeir’s behavior and appointments on top of her pregnancy and caring for her two other children.

“Some days I don’t eat because he doesn’t eat,” said Thornton from her home in Alameda County in the San Francisco Bay Area. “I don’t want to hurt my unborn child. So I try to eat some crackers and cheese and stuff, but I don’t eat a meal because he doesn’t eat a meal.”

Seeking a diagnosis for a child’s behavioral problems can be challenging for any family as they navigate complicated medical and educational systems that don’t communicate effectively with parents, let alone each other.

A common obstacle families face is landing an appointment with one of a limited number of developmental specialists. It is particularly difficult for families with Medi-Cal, whose access to specialists is even more restricted than for patients with private insurance.

As they await their turn, they boomerang among counselors, therapists, and school officials who address isolated symptoms, often without making progress toward an overall diagnosis.

Obtaining a timely diagnosis for autism, anxiety, attention-deficit/hyperactivity disorder, or other behavioral disorders is important for children and their parents, said Christina Buysse, a clinical associate professor in developmental and behavioral pediatrics at Stanford University.

“Parent stress levels go down when a child is diagnosed early,” because they learn how to manage their child’s behaviors, she said.

Intervening early can also help retrain a child’s brain quickly and avoid lifelong consequences of developmental delays, said Adiaha Spinks-Franklin, president of the Society for Developmental and Behavioral Pediatrics.

“A speech and language delay at the age of 2 can put a child at risk of reading comprehension problems in the third grade,” she said.

Buysse is likely the right type of medical specialist for Ahmeir. As a developmental-behavioral pediatrician, she can often unify different symptoms into one diagnosis, and she knows what kind of therapy or medication patients need.

The Society for Developmental and Behavioral Pediatrics reports that there are only 706 actively certified developmental specialists in the nation.

“There just aren’t enough of us,” Buysse said, and some developmental specialists don’t accept Medicaid patients because they believe the reimbursement rates aren’t adequate.

Thornton didn’t know her son needed to see a developmental specialist, and he had never been referred to one, despite his many medical appointments. Once she learned about this type of specialist in May, she asked his pediatrician for a referral.

Alameda Health System, which provides Ahmeir’s primary care, “does not have a developmental-behavioral pediatrician on staff at this time,” said Porshia Mack, the system’s associate chief medical officer of ambulatory services.

“We have made efforts to hire them, but recruiting and retaining pediatric subspecialists is difficult for all health systems, and public safety-net systems in particular,” she said.

Karina Rivera, a spokesperson for the Alameda Alliance for Health, Thornton’s Medi-Cal managed care plan, provided a list of nine developmental-behavioral pediatricians she said are in the plan’s network.

However, the only two in Alameda County work for Kaiser Permanente, which “is a closed system,” acknowledged Donna Carey, interim chief medical officer of the Alameda Alliance. In practice, that means “even if they have a developmental pediatrician, we don’t have access to that pediatrician,” she said.

The other seven specialists are in surrounding counties, which could pose transportation challenges for Thornton and other patients.

The Alameda Alliance for Health met state requirements for patient access to specialists in the most recent review of its network, in 2022, said Department of Health Care Services spokesperson Griselda Melgoza. The plan “was found compliant with all time or distance standards,” she said.

However, after learning from California Healthline that the plan considers Kaiser Permanente specialists part of its network, the department contacted the insurer to inquire, and will work with it “to ensure member-facing materials accurately represent their current network,” Melgoza said.

A month after starting preschool in fall 2023, Ahmeir was evaluated for speech delay through his school district. His pediatrician also began ordering tests to understand his eating habits.

But Thornton believes Ahmeir’s symptoms aren’t isolated problems that can be addressed in a piecemeal fashion. “It’s just something else. It’s his development,” she said. “I know a tantrum, but he doesn’t get tantrums. He will hit people. That’s a no-go.”

In addition to addressing medical concerns, a developmental specialist could help parents like Thornton understand what school districts offer and how to expedite school evaluations, Spinks-Franklin said. Ahmeir faces a six- to eight-month wait for a comprehensive evaluation through his school district for additional services, Thornton said.

It’s common for parents to get confused about what a school district can and can’t do for kids with developmental disabilities, said Corina Samaniego, who works at Family Resource Navigators, an organization that helps parents like Thornton in Alameda County. For instance, Samaniego said, school districts cannot provide medical diagnoses of autism, nor the therapy to address it.

Ahmeir has made significant improvement with speech therapy provided through the school district, Thornton said, and now speaks in full sentences more often. But she remains frustrated that she does not have a diagnosis that explains his persistent symptoms, especially his reluctance to eat and difficulty expressing emotions.

Thornton believes she has done everything she can to help him. She has even created elaborate food landscapes for Ahmeir with dinosaur-shaped chicken nuggets, mashed potato volcanoes, gravy lava, and broccoli trees — only to have him turn his head away.

As of late May, she continued to seek advice from teachers and counselors while she waited for an appointment with a specialist.

“I try to stay strong for my son and do the best I can and be there for him, talk to him, teach him things,” she said. “It’s been really tough.”

This article is part of “Faces of Medi-Cal,” a California Healthline series exploring the impact of the state’s safety-net health program on enrollees.

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

By Sejal Parekh
Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation, which is not affiliated with Kaiser Permanente.