Hana’s parents first took her to see a physical and occupational therapist in 2018 when she was an infant, after she experienced seizures and showed delays with motor skills, like rolling over and sitting up. Then the pandemic forced the therapies to move online in April 2020.
On this particular Friday, Delgado was eager to see if Hana was making progress as she approached her third birthday. He asked Abdelmoaty a barrage of questions: Was Hana eating better? Was she having any stomach problems? How was her sleep? What skills did the family want to work on today? As Hana started to fuss, Abdelmoaty jumped up and grabbed a packet of graham crackers from the kitchen. She came back and handed one to Hana. “Cookie?” she asked. Hana eagerly reached for it.
Delgado seized the opportunity. “You did such a great job of giving it to her and saying ‘cookie’” he said. “Another thing you can do to focus on the ‘c’ sound is, ‘c-c-c-cookies’ Work on getting the ‘c’ so she can imitate the ‘c’ sound.”
After the translator repeated the directions in Arabic, Abdelmoaty nodded and handed Hana another cookie. “C-c-c-cookies. You like it?” she asked her daughter.
“Yeah, that’s perfect. She’s looking right at your face. She’s seeing what you’re doing with your mouth … the more we do it, the more likely she’ll imitate it,” Delgado said.
In the United States, an estimated 15 percent of children ages 3 to 17 have developmental delays or disabilities; in children’s first years, some of these delays may be evident in late acquisition of skills like crawling, walking and talking. Research shows that early help from experts in the form of speech, physical or occupational therapy and support from pediatric specialists can have profound results for children and often help them meet the same milestones as their peers. In some cases, infants and toddlers who get early support make so much progress they no longer need services or qualify for special education when they start school.
Now, the pandemic has forced in-person therapies for infants and toddlers online and onto devices, and that’s not necessarily a bad thing. Some experts say remote therapy for young children has returned early intervention to an important piece its original mission: training parents to be experts who can support their children’s development.
“For the longest time, in early intervention, we’ve had this all wrong. We’ve thought that the main person we were there to serve is the child,” said Delgado. “And in reality, the main person we’re there to serve is the parent.”
Delgado has seen this shift in his work with Hana. Abdelmoaty used to sit nearby and watch as Delgado modeled activities. Now that they are separated by a screen, Abdelmoaty gets more practice. Delgado said that teletherapy forced him to say, “‘I can’t do it for you. I can coach you and mentor you through it, but I can’t do it for you.’”
He has already seen Abdelmoaty’s confidence increase as she works with her daughter during their sessions. “To be completely honest, I think it’s actually more beneficial than in-person therapy,” he said.
Boosting the skills of parents to support their young children was one of the goals of the Program for Infants and Toddlers with Disabilities, also known as Part C of the Individuals with Disabilities Education Act, when it was included in the reauthorization of the IDEA in 1986.
Parents say the program can be life-changing for some children. Pennsylvania mom Kaitlyn Transue, whose son was diagnosed with a speech delay at 16 months, said her then-toddler made “astronomical” progress after the early intervention services he received were expanded to include occupational therapy when he was 2. “The difference was insane, unbelievable,” Transue said. By the time her son turned 3 and aged out of early intervention, he had caught up with his peers in his ability to use expressive language skills. The family stopped looking for a preschool for children with disabilities, as the toddler no longer qualified as having a delay.
Transue credits her son’s transformation, in large part, to early intervention. “If I hadn’t pushed for it that early, we wouldn’t be where we are,” she said.
But early childhood intervention services, which are funded in part by federal money, served about 3 percent of infants and toddlers in 2017, just a fraction of those who most likely would benefit from the services. Federal funding for the program, which was $470 million in fiscal year 2019, has increased since the program’s launch in 1987, but in recent years hasn’t kept up with inflation.
Seventeen states said their funding for the program has been frozen or decreased in 2020-21, according to a survey by the IDEA Infant & Toddler Coordinators Association. One state is considering dropping out of the federally-funded program due to “state budget availability.”
Even before the pandemic, Texas had drastically cut funding and services. Last year, federal officials ordered the state to boost its early intervention services after a report found the state cut funding by $18 million between fiscal years 2011 and 2019 and served fewer children compared to previous years, despite an increase in the total population of infants and toddlers.
“We are grossly underserving children in early intervention,” said Karen Berman, director of Illinois Policy at Start Early, an early learning nonprofit. “When we think about the opportunity to really do early detection and prevention in early intervention, we’re just not doing what we should be doing.”
The pandemic has made it harder for families to get these critical services during the short time when children are eligible and would most likely to benefit from added support. Children who are born premature or who are born with a diagnosed disability, such as Down syndrome, can be referred to services. They can also get an evaluation for therapy if a pediatrician notices delays or if parents reach out to their local early intervention program. In some states, like Illinois, lead exposure provides automatic eligibility for early intervention.
But after the pandemic hit, many routes to help were cut off. A study by the nonprofit Advocates for Children of New York found that in New York City alone, there was an 82 percent decline in referrals to early intervention services during a four-week period beginning in March 2020. Between July and September 2020, the number of infants and toddlers in New York City receiving services was 15 percent lower than in the same period in 2019.
Reaching all children eligible for early intervention services has always been a challenge. A 2018 study found states vary widely in screening children under the age of 3 for developmental delays. Although experts recommend children receive such screenings from a healthcare provider, nationwide only about a third of children under age 3 receive them. Many children could be slipping through the cracks.
The requirements that must be met for a child to receive services also vary greatly from state to state. Arizona and Alaska only accept children with a delay of 50 percent or greater in one or more areas of development, while other states, like Colorado and Pennsylvania, set the benchmark at 25 percent. Some states ask parents who earn above a certain income level to help pay for the therapies, while others provide services at zero cost to all families. It’s also harder to access pediatric therapists in rural areas.
In a recent survey of states, 41 out of 48 states that responded said they are experiencing shortages in qualified providers. “Even though it’s an entitlement, we have children on waiting lists,” said Berman of Start Early.
There can also be societal challenges to enrolling eligible children in therapies. Young children develop at different speeds, so it can be hard to determine how far behind a child may be. Some parents may worry about the stigma of enrolling their child in therapy or second-guess perceived delays. “You hear other family members around you say, ‘Oh they’re fine! Oh boys do things late, or boys just have this typical behavior,’” said Bianca Sikes, a Texas mother of six whose youngest child qualified for early intervention speech therapy at age 2.
But early childhood experts say time is of the essence when it comes to young children: the brain develops rapidly in the first few years of a child’s life. “You’re going to save money in the end if you’re helping kids before they get to school,” said Amanda Morin, the associate director of thought leadership and expertise at Understood, a nonprofit focused on learning and thinking differences. “You have all these years to make greater gains.”
Experts say the pandemic has created a unique Catch-22 for early intervention: While some children have missed out on therapies, the sessions are more accessible than ever.
Some states made online therapy eligible through Medicaid and allowed therapists to move online for the first time. Illinois approved a policy allowing providers to offer therapy via telehealth just a few weeks into the pandemic. Delgado said he hopes the pandemic will also make the system easier for families long term, including actions like moving the referral process online and off of fax machines.
Still, pediatrician appointments have fallen by the wayside for many families, and many parents have stopped attending face-to-face meetings with community organizations, such as home visiting programs. That means the experts who often refer children to therapy aren’t seeing them nearly as frequently. Referrals to Any Baby Can, a nonprofit early intervention service provider in Austin, Texas, dropped from about 110 a month on average to around 40 in April 2020.
Ramping up outreach has helped the nonprofit increase referrals, which now average nearly 160 a month.
Remote therapies aren’t perfect: They are only available to families with access to devices and the internet. And experts say some therapies, like physical therapy, are harder than others to offer remotely.
But after the pandemic ends, some families hope elements of the new system will continue, including the flexibility and the new parent-centric focus. Nick Schurk was able to move therapy for his 2-year-old daughter, Amelia, online, allowing her to continue physical, occupational and speech therapy as well as specialized skills training several times each month. Schurk said she hasn’t skipped a beat. “The past year has been amazing,” he said. “She started crawling, started walking, her vocabulary has gone through the roof.”
Amelia’s speech therapist, Martha Levien, said it’s a testament to how hard her parents have worked to apply what they’ve learned. “She really has surpassed expectations for what we would hope for her development,” she said.