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California's lack of early health screening for children delays proper treatment

Fellowship Story Showcase

California's lack of early health screening for children delays proper treatment

Picture of Jocelyn Wiener

Jocelyn Weiner completed this story as a USC Center for Health Journalism California Data Fellow. 

Randall Benton
Riley Yeates 9, left, looks out towards the window while with her mother Kirsten Yeates at their West Sacramento home on Saturday, January 6, 2018. Riley didn’t receive an autism diagnosis until just after her third birthday. By then, she had become increasingly agitated and aggressive, her mother said. Randall Benton
The Sacramento Bee
Monday, January 15, 2018

Kirsten Yeates was worried. Her newborn daughter, Riley, wouldn’t sleep more than a few minutes without being held and rocked. At just a few weeks old, she’d begun vomiting several times a day.

Yeates asked Riley’s pediatrician what was wrong. He reassured her that Riley was fine,Yeates said.

During the next 2 1/2 years, she asked her daughter’s doctors in Sacramento whether it was normal that Riley didn’t respond to her own name, didn’t seem to hear well, was refusing solid foods and frequently spiked high fevers. Over and over, Yeates said, she heard the same response: “She’s fine.”

Reached on the phone, Riley’s pediatrician from that time said he did not remember her specifically, because she has not been his patient for several years. But he said he routinely screens 18-month-olds, and follows up when a parent voices concern about developmental issues.

Yeates, however, said she only remembers the pediatrician asking an occasional question about her daughter’s development: Could Riley sit up? Did they play peek-a-boo together? She didn’t recall completing any sort of formal screening tool. If she had, Yeates said it might have made clear Riley needed extra help. As it was, Riley didn’t receive an autism diagnosis until just after her third birthday. By then, she had become increasingly agitated and aggressive, her mother said.

Yeates’ experience shows, data suggest and many experts agree: California has a screening problem.

In formal developmental screenings, parents answer a series of structured, evidence-based questions about their young child’s development, to allow providers to identify any potential problems. The screenings aren’t complicated, although they can take some time. Doctors can have office staff complete them or have parents complete them online.

But, too often, that’s not happening. In 2016, less than 21 percent of California parents reported that their young children’s health care providers had them complete a standardized developmental screening tool, according to an analysis of the National Survey of Children’s Health data, which was released recently by the Child and Adolescent Health Measurement Initiative at the Johns Hopkins Bloomberg School of Public Health.

That puts the state in 43rd place nationally.

Not that the rest of the country is doing especially well. In the top-performing states – Oregon and North Carolina – less than half of parents surveyed reported their children had been screened. Still, other states have been able to increase their screening rates by improving education and incentivizing providers to complete the screenings – or penalizing those who don’t.

For many children’s advocates and policymakers, this is serious cause for concern. Formal developmental screening questionnaires are critical for catching issues in children while they’re young enough that intensive interventions might alter the course of their lives.

With appropriate screening, Yeates said doctors might have recognized earlier that Riley needed speech therapy and feeding therapy, because toddlers with autism can struggle to communicate and may resist starting solid food. Instead, the family experienced years of confusion and frustration, suspecting that something was wrong, but having no idea how to get help for their daughter.

“We know from early brain development that kids who don’t get the proper stimulation in the first few years of life may be forever behind in the acquisition of core skills we need to succeed in life,” said Dr. Edward Schor, a pediatrician and senior vice president of the Lucile Packard Foundation for Children’s Health.

Because of that, the screenings have been federally mandated since 2010. But mandates do not necessarily produce funding for systems to identify and support children with developmental issues. Some advocates say California’s system is particularly bad, especially for low-income children of color. Studies show that minority children routinely get identified with autism years later than white children.

“What’s been missing in California is a real firm stand on the necessity to do this, providing incentives to do it and providing guidance to do it,” Schor said.

Many pediatricians elect to “eyeball” their patients, or ask a few casual questions, Schor said. Even those who do the more formal screenings frequently fail to follow up with parents.

Only 2.7 percent of California’s children under 3 received early intervention services in 2015, according to data from the federal Office of Special Education Programs. In some states, including Massachusetts, the rate was above 9 percent.

Despite her pediatrician’s assurances, Kirsten Yeates said she pressed for answers about Riley. She asked for a lead test. It came back normal. She asked for a hearing test. An ear, nose and throat doctor found swollen tonsils and fluid in Riley’s ears. Yeates said the doctor told her that a tonsillectomy and ear tubes would likely solve everything.

It didn’t.

Even with the surgery, Riley continued to lose language skills and refuse solid foods. Sometimes she tried to hurt herself or became aggressive with others. She regularly spiked fevers.

When Riley was 2½, her pediatrician listened to her lungs and determined that the little girl’s fever came from pneumonia caused by vomiting, Yeates said.

The nearest pediatric gastrointestinal specialist covered by the family’s insurance was 90 miles away, in Pleasanton. Yeates took the day off work – again – to drive her daughter to a doctor’s appointment. When the doctor asked questions, Riley stared blankly.

“She doesn’t talk,” Yeates explained.

For the first time, Yeates said, a doctor seemed concerned. She suggested Riley be assessed for speech delays.

A few months later, the family switched to a new pediatrician, Dr. Anita Jain, at UC Davis primary care network. She quickly referred Riley to a developmental psychologist at the UC Davis MIND Institute.

“It was clear that something wasn’t right,” Jain said.

Soon after, in January 2012, Riley was diagnosed with autism.

The value of early developmental screenings is not in dispute. According to a survey published by the Silicon Valley Community Foundation this past summer, 95 percent of pediatricians surveyed think children should be formally screened at regular intervals. Yet only 37 percent reported using an evidence-based screening tool to identify most developmental concerns.

Why aren’t doctors screening California’s children?

In large part, the problem boils down to time and money, said Schor. About 56 percent of the state’s youngest children are insured through Medi-Cal, the government insurance program for low-income Californians.

Medi-Cal pays so little – and office visits are so brief – that pediatricians tend to prioritize physical examinations and immunizations over developmental screenings, Schor and other experts said.

Even when pediatricians do complete the screenings, they have little financial incentive to report them to the state, because they don’t get paid extra for writing the correct code.

In 2015, Assemblyman Rob Bonta, D-Oakland, and 37 other state legislators signed a letter to the state secretary of Health and Human Services calling for the agency’s leadership to improve the rate of developmental screenings. In 2016, Bonta sent a follow-up letter.

“We have to do better,” he said in a recent interview. “It’s unacceptable where we are.”

Recently proposed legislation jointly authored by Bonta and Assemblyman Kevin McCarty, D-Sacramento, would require pediatricians to formally screen Medi-Cal children three times before they turn 3.

State agencies have created the Statewide Screening Taskforce to address the state’s “abysmal” screening rates, said Karen Finnello, the task force’s project director. The interagency initiative aims to improve the use of standardized developmental screening tools, she said.

But screenings are only helpful if they lead to children being linked with services. In many regions of the state, such services are in short supply. Some pediatricians intentionally don’t screen because they assume patients won’t be able to access help, said Dr. Renee Wachtel, a developmental pediatrician who teaches at UCSF School of Medicine.

“In a way, they feel worse, because they identify the child with the problem and then can’t get them the services that they need,” she said.

Even though the Silicon Valley Foundation survey found that time and money were the primary barriers to screening reported by pediatricians, nearly two-thirds also blamed the lack of available services.

Part of Wachtel’s mission is to train pediatricians on the importance of using standardized screening tests. She sees such outreach as effective – particularly when it comes from other doctors.

Such outreach is important on the parent side, too, many experts said. Parents often don’t know to ask for screenings and might not be aware that their children aren’t hitting developmental milestones. This can be especially difficult for families in low-income communities.

“First you have to understand about getting the screening,” said Richard Dana, executive director of the Mutual Assistance Network in Del Paso Heights. “Then you have to get the screening, then you have to seek out services from the screening… But those services aren’t really available, and certainly not in low-income neighborhoods.”

Gina Warren, a clinical pharmacist who grew up in Del Paso Heights and returned two years ago to found the Neighborhood Wellness Foundation, said the children she works with often don’t get screened for developmental issues. By the time they get to school, they are labeled “bad” or “disruptive,” she said.

“They act out because they don’t know any way to articulate their pain,” she said.

For parents whose children get diagnosed late, early services represent “a golden ticket that you missed out on,” says Kelly Young, executive director of WarmLine Family Resource Center in Sacramento, which provides support and training to families of children with disabilities. Yeates works there as a community parent.

Karen Uribe, a registered nurse in Citrus Heights, said her oldest son, Alexander, wasn’t diagnosed with autism until he was nearly 3. Like Yeates, Uribe had sensed something was wrong by the time Alexander was 1, and says she was told by the doctor, “He’ll catch up.” She believes that Alexander, now a teenager, lost out on crucial services as a result.

“Absolutely, yes, his trajectory would have been different,” she said.

Uribe’s two younger children, who have a less severe form of autism, were diagnosed even later, she said.

So how can California improve?

Other states have increased their screening rates by improving education and incentives.

But some children’s advocates believe the seeds of an answer may already exist here.

Help Me Grow initiatives have sprung up in 20 counties around the state – and are being discussed in 21 more. These initiatives take a multipronged approach to the problem: They give health care providers, parents, educators and others an easy channel to connect children with a range of services. They use data to identify gaps in services. And they do outreach to providers and families to emphasize the importance of developmental screenings.

In California, the first such program was born in Orange County in 2005. Dr. Marc Lerner, a behavioral pediatrician in the county, says screening rates have more than doubled there since the program started.

Sacramento is currently working to implement its own Help Me Grow program, says Nancy Herota, assistant superintendent of educational services for the Sacramento County Office of Education.

“Universal screening is critically important,” she said.

Yeates still wishes someone would have screened Riley earlier.

Today, Riley is a friendly third-grader who lives in a bright West Sacramento home with her parents, little sister, an enthusiastic Labrador and six chickens. She reads above grade level and recently won an award for citizenship at her elementary school.

Applied Behavior Analysis and various types of feeding and speech therapy have helped Riley transform from a little girl who couldn’t communicate into a charming, flourishing child, her mother said.

“I’m pretty thrilled with all of that,” Yeates said. “However, I still kind of wonder what might have been easier for her or different if we had been able to get some family-focused intervention early on.”

Riley’s current pediatrician, Jain, said it’s too soon to know the long-term impacts of having delayed Riley’s care. But she said studies show that beginning services before a child turns 2 is more effective. Parents whose pediatricians dismiss their concerns, Jain said, should seek an evaluation on their own “before time is wasted.”

Recently, as Kirsten Yeates looked through two carefully organized binders of Riley’s medical records, Riley thumbed through her baby book.

There was a picture of Riley’s ultrasound (“Ewww,” giggled her little sister). There was Riley’s newborn hospital bracelet, a print of her baby hands and feet, a picture of her first birthday cake – strawberry with chocolate filling and violet fondant, which she probably refused to eat.

If only Yeates had not been made to doubt her own intuition, she believes her older daughter could have received the intervention services she needed sooner, sparing the whole family years of frustration and pain.

“I’m at least grateful we were able to start when we did,” Yeates said.

She knows many other children are still waiting.

[This story was originally published by The Sacramento Bee.]