Every year, tens of thousands of infants are born prematurely, at a low birthweight, or with other conditions that would make them automatically eligible for therapeutic services that could help them thrive.
When everything goes smoothly, early intervention provides those services, required by federal law, for children ages birth to 3. Depending on the community, the program is paid for by federal, state or local dollars, or private insurance.
But far too few of the youngest children actually receive that help. (It’s an issue I wrote about earlier this year.) One particular gap is in services provided to infants from birth to 1. Only about 1.3 percent of babies that age receive early intervention services, compared to 7.5 percent of 2- to 3-year-olds, according to a new report from the think tank New America.
Kayla Khan, a long-time speech therapist, has experienced that gap herself.
When her infant daughter was released after a month and a half in neonatal intensive care, she asked the discharge team about early intervention services. Because of her background, she knew about the therapies.
At the time, the family lived in the Washington D.C. area, and no one at the hospital was helpful. “They said, ‘You don’t want that,’ or, ‘It’s not going to help you,’” Khan recalled.
After moving to Seattle a few months later, Khan finally connected with early intervention services that provided physical and feeding therapy to her daughter. She now helps lead a decade-old effort in Seattle to provide care and support specifically to families of “tiny babies” who are transitioning from the hospital to home.
The program relies on building trust and communication with hospital staff to ensure eligible babies get referred to early intervention and speeding up the evaluation timeline so babies get seen within three days of a referral — “really, really, really fast” for a system where the requirement for referral is 45 days, Khan said. Her program also connects families with therapists who are skilled and trained in the specific needs of newborns.
“We’re making this process that was designed for all children, birth to 3, work for the tiniest babies,” Khan said.
This kind of targeted attention for the youngest is desperately needed, according to two recent reports. The first, focused on Illinois, is from early nonprofit advocacy group Start Early. The other report is from the left-leaning New America think tank earlier this month. (I recently completed a reporting fellowship with New America which supported some of my writing on early intervention, among other topics.)
Among the two reports’ recommendations:
Make the list of conditions that automatically qualify a baby for early intervention easy to understand and find. States have identified scores of different qualifying conditions that make a child more likely to develop a delay, including extreme prematurity, low birthweight, a parent with a substance use disorder, and child welfare involvement. But, as the New America report points out, finding a user-friendly list of the conditions can be a challenge. “The eligibility criteria and the way things work varies so much from one state to the next,” said report co-author Carrie Gillispie, the Early Development & Disability project director at New America.
The Start Early report noted that in a related study, two families were judged ineligible for early intervention despite their children having medical conditions that should have made them automatically eligible.
Consider co-locating early intervention staff in the NICU to make the transition as smooth as possible. Coordinators would be physically present in NICUs to build relationships, participate in medical rounds, and lead the process to enroll children in early intervention programs, the Start Early authors wrote. Both reports stress the importance of providing the family with a personal connection to early intervention before a baby gets discharged from the hospital.
Improve coordination and communication with the early intervention system, hospitals and pediatricians. Pediatricians are not always notified when doctors in the hospital refer a child to early intervention services. And well-child visits are often so short that physicians miss the full developmental picture. Too often, referrals come after a child is already starting to struggle, said Sarah Gilliland, a senior policy analyst in the New Practice Lab at New America, who co-wrote the report.
Bridge cultural and language barriers with families by hiring more multilingual hospital and early intervention staff. Cultural divides are pervasive throughout the early intervention system, where the overwhelming majority of the therapists and other providers in many communities are white, English-speaking women. But even simple forms often go untranslated: One survey found that nearly three-quarters of state early intervention referral forms are only available in English, the New America report noted. The report also stressed that families should be reassured that early intervention services are meant to be support, not surveillance. “Hesitant families might benefit from a connection with families within their own communities who can explain what to expect from early intervention,” the authors wrote.
Strengthen electronic referral systems and centralize enrollment in early intervention programs. When I reported on the too-often broken path from the NICU to early intervention in Chicago, I heard stories of a system that relied heavily on faxing paper forms. NICU physicians often had no idea what happened with referrals they made. Indeed, surveys have found that only a fraction of early intervention coordinators have access to technology that links children’s electronic health records to the referral system.
Some states and communities are introducing technological advances which could be implemented more widely, the New America report noted. For instance, one state is trying to address the problem using “e-referrals,” which share an infant’s medical records directly with the early intervention system.
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