Illinois hospital staff will soon be required by law to refer parents of severely premature infants to services that can help prevent years of intensive and expensive therapy later, when the children are older. The new law follows reporting from The Hechinger Report that exposed how hospitals often fail to connect many eligible parents to these opportunities for their children after they leave neonatal intensive care units.

Earlier this year, Hechinger contributor Sarah Carr wrote about how, across the country, far too few parents are made aware of the kinds of therapies their babies are entitled to under federal law. Such early intervention services can ultimately reduce the need for these children to require costly special education support as school children. 

Carr noted: “Federal law says children with developmental delays, including newborns with significant likelihood of a delay, can get early intervention from birth to age 3. States design their own programs and set their own funding levels, however. They also set some of the criteria for which newborns are automatically eligible, typically relying on qualifying conditions like Down syndrome or cerebral palsy, extreme prematurity or low birthweight. Nationally, far fewer infants and toddlers receive the therapies than should. The stats are particularly bleak for babies under the age of 1: Just 1 percent of these infants get help. Yet an estimated 13 percent of infants and toddlers likely qualify.”

After The Hechinger Report story was published, Illinois state Rep. Janet Yang Rohr authored legislation to require that hospitals distribute materials informing parents of premature and low birth weight babies about their eligibility for early intervention therapies. The bill also required that hospitals make a nurse or physical therapist available to explain these rights to families.

“The problem is that these families often don’t know about these services,” Yang Rohr said last spring, after her chamber passed the bill. “So this bill improves that early intervention process by requiring NICU staff to share information about these services and requires hospital staff to write a referral to these programs for families that are eligible.”

Illinois Gov. JB Pritzker signed that bill into law earlier this month. It takes effect in January. 

Carr also wrote: “The stakes are high for these fragile, rapidly growing babies and their brains. Even a few months of additional therapy can reduce a child’s risk of complications and make it less likely that they will struggle with talking, moving and learning down the road. In Chicago and elsewhere, families, advocates and physicians say a lot of the failures boil down to overstretched hospital and early intervention delivery systems that are not always talking with families very effectively, or with each other hardly at all. ‘They really put the onus of helping your child get better outcomes on you,’ said Jaclyn Vasquez, an early childhood consultant who has had three babies of her own spend time in the NICU.”

“Early intervention is life-changing for many families, as these programs provide critical services and therapies as children develop,” Illinois state Sen. Ram Villivalam said when the bill was sent to Pritzker. “But, these services can only benefit those they are able to reach, which means uplifting the program and expanding its outreach to those who need it is imperative.”

This story about premature infants was produced by The Hechinger Report, a nonprofit, independent news organization focused on inequality and innovation in education. Sign up for the Hechinger newsletter.