JOLIET, Ill. — After several challenging and stressful months in the neonatal intensive care unit, Karen Heath couldn’t wait to take her triplet sons home. The boys had been born severely premature at 25 weeks, each weighing a bit over a pound. In the early hours, doctors cautioned they would not survive long. The triplets, thankfully, proved the doctors wrong. But for about three months, Heath was not allowed to hold them, satisfying herself with photos, videos and kisses blown.
The long-anticipated discharge in the early summer of 2019 was joyful, but also rushed and, as Heath recalls it, somewhat cavalier. An hour before release, a physical therapist showed Heath how to help the babies gain strength by gently stretching their legs out. A nurse gave her a quick tutorial on how to use the oxygen tanks they would need for the next couple of months. And Heath gathered together basic necessities and a few mementos: diapers, pacifiers, blood pressure cuffs and tiny hospital bands.
But no one at the hospital, one of Chicago’s largest, told Heath or her husband what she felt would have been the most helpful advice in the long run: The triplets’ low birth weight alone meant they were automatically eligible for what’s known as early intervention services, which can include speech, physical, occupational and other therapies.
“This should have been a conversation way before the boys were even released,” said Heath, who lives in Joliet, a city in the suburbs of Chicago. (She declined to identify the hospital to The Hechinger Report because her children still receive regular treatment there.)
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Doctors, and science more broadly, have made astounding gains in their capacity to save the lives of extremely premature babies, defined as those born before 28 weeks. In the 1960s, just 5 percent of premature infants with respiratory distress survived; now it’s about 90 percent.
Despite these encouraging gains, there’s an abysmal record across the country, exemplified by Chicago, of helping these babies after they exit the NICU, particularly with access to the therapies that most reduce their risk of needing intensive, and expensive, special education services as schoolchildren. Many children who receive early intervention do not require special education services in kindergarten, including slightly less than half of those with developmental delays, according to one 2007 study.
“We have so much information on early brain development now,” said Alison Liddle, a physical therapist in Chicago who is part of a team that studied access to early intervention in the city. One of the findings was that the system is difficult for parents to navigate. “Support systems have to catch up. We have a critical window to help families.”
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.
“It’s like people being told at 65 that they are eligible for Social Security and a year later they are not on either Social Security or Medicare,” said Dr. Michael Msall, a neurodevelopmental pediatrician who has led efforts on early intervention access at the University of Chicago’s hospital system and is on the study team. “We’d have riots in the streets.”
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.
Related: Black and Latino infants and toddlers often miss out on early therapies they need
Hospitals use different processes for educating families about early intervention, which often occurs at an overwhelming time for parents. “That initial connection with the families is tricky because the families tend to be very busy when they take the baby home,” said Dr. Raye-Ann deRegnier, the lead physician on the study and director of the Early Childhood Clinic at Lurie Children’s.
At Lurie and Chicago’s Prentice Women’s Hospital, where deRegnier works, the physical therapists are generally responsible for informing families of early intervention. “I wouldn’t say that happens in every NICU,” she said. “Sometimes it’s discharge nurses, sometimes discharge coordinators, sometimes others.”
Under the current landscape, it’s helpful when physical therapists have conversations with families early and often, deRegnier said. But even when that happens, miscommunications can occur. The doctor said she recently made a point to talk to a mother about early intervention, and the woman said she had never heard of it. Yet the physical therapist had previously had a lengthy conversation with the mother about the program.
In Illinois three years ago, the state’s Legislative Black Caucus urged the creation of demonstration projects at neonatal intensive care units in hospitals, intended to model how to better connect families to services. The state’s General Assembly supported the idea, but no funding was attached to the recommendation, and it has not become a reality.
However, a coalition of therapists and hospital physicians, including deRegnier, has been working on a pilot study that included a look at barriers that families face after they leave the NICU at several of Chicago’s largest hospitals.
Their findings, published in late December, show that only 13 percent of the 60 families — all of them Medicaid eligible and with infants who automatically qualified for early intervention — were receiving those therapies three to four months after discharge. In Illinois, the therapies are overseen by the state’s Department of Human Services and its Division of Early Childhood. While the specific reasons varied, most of it came down to bureaucracy and bad communication, according to the study team.
“When you make the system so difficult to navigate, families give up,” Liddle said. “There were many families just waiting out there for services that they really need.”
By the end of June 2019, Heath’s triplets were all at home along with their 1-year-old brother. Although her husband had to return to work, Heath’s mother was around to help. The family had little idea of how best to support their growth. Doctors had warned her that the boys might never be able to sit up, walk or communicate like other children. “My main focus for so long was on coming home,” she said. “Once we got home, I’m like, ‘Now what?’”
About two weeks after the homecoming, a nurse from the county stopped by to check in on the 6-month-olds. Heath can’t say for sure, but she believes that the woman must have made a referral to early intervention because several weeks later, in August, the family got a call saying that the triplets might be eligible for therapy. By that time, they were more than 7 months old.
Heath leapt at the opportunity, but the process moved slowly after the initial call. In October, when the boys were 9 months, Heath got word that they had been automatically eligible all along because of low birth weight. But it wasn’t until early 2020, after the boys celebrated their first birthday, that the therapy was scheduled to start.
Then the pandemic hit, so the initial physical and developmental therapy sessions with three near-toddlers were all attempted over Zoom. “The boys were uninterested,” their mother recalled. “Try doing therapy on an iPad with triplets and (a toddler) hanging around.”
It wasn’t until the summer, when the children were 18 months, that they got their first in-person therapy. “The hospital should have had something in place so these kids could have gotten the services as soon as they came home,” Heath said. “I really feel like they dropped the ball. No one can blame the pandemic because they came home way before Covid started.”
The families participating in the multihospital pilot study had a leg up on Heath: They were at least told about early intervention, with an initial referral made before leaving the NICU. But even that was not enough for most of them to connect successfully with help. A lot of the struggle came down to “logistical and technological barriers,” said Zareen Kamal, a policy specialist in Illinois for Start Early, which advocates on early childhood issues.
The early intervention system in Illinois is decentralized, with 25 coordinating offices across the state. Caseloads are supposed to be capped at 45, but due to underfunding and short staffing, average much higher, with some reports of service coordinators juggling over 100 families. Many of the offices rely on fax for communications, with no statewide electronic system in place. Incoming phone calls to families from the coordinators often register as spam. And most of the offices don’t staff the phones in the evening or weekends, when working parents are most likely to reach out.
All this means that case workers sometimes remove families from their list as “uninterested” when, in fact, the parents are unaware, or unsure how to take the next step.
Related: Six ideas to ease the early intervention staffing crisis
The state is currently taking steps to ensure equitable access to early intervention, said a spokeswoman for the Department of Human Services in an e-mail. That includes updating the standardized referral form and exploring options for electronic referrals.
“We realize that technology needs to be modernized,” wrote Rachel Otwell, the spokesperson.
That said, phone and fax remain the primary means of communication due to privacy concerns, she said.
Otwell said the agency is engaged in ongoing surveys and focus groups with thousands of early childhood community members. The state has made progress with staffing vacancies in early intervention, she added, and remains focused on “lowering caseloads to recommended levels.”
As the early intervention system currently exists in many cities and states, inequities are baked into every step of the process. Lower-income families are less likely to receive timely referrals, get screened and approved expeditiously, and then connect with therapists available for in-person work. Families with private insurance can often bypass the multistep bureaucratic process by having the therapies covered through those benefits. Studies have shown that Black newborns for a host of reasons, including higher poverty rates and weaker early medical care on average, are five times less likely than white ones to receive early intervention services.
For newborns there is pervasive confusion around who is automatically eligible, even among those who work in the early intervention system, Liddle says. “Some children are turned away from receiving services despite being autoeligible, because they do not show a delay on a specific assessment tool,” she said.
Complicating matters, states have different eligibility criteria: In some states, an infant with lead poisoning or a parent with a mental health diagnosis qualifies for the therapies, whereas in others they do not.
There’s also a disconnect between the medical and early intervention systems, said Msall, the University of Chicago-based physician. His colleagues in NICUs routinely fax referrals over to early intervention, he said, but the information disappears into the ether, with no follow up or technology in place for the physician to know if the connection was made or what an initial evaluation found. DeRegnier agreed that the follow-up process is complicated, partly because families may need to sign a consent form for information to be shared even with physicians.
In a nutshell, families too often have to navigate through the system entirely on their own — with only the most knowledgeable and well resourced likely to find their way to a successful outcome.
Vasquez felt immensely grateful her background as a special education teacher made it easier to supplement the work of overstretched hospital staff when her twin daughters were born at 27 weeks four years ago. The smaller of the two spent over a year so medicated in a Chicago NICU that she was essentially in a medical coma. But as soon as possible, Vasquez and her husband stepped in to help provide some early therapies. Following the advice of hospital therapists, they helped her sit up, roll over, learn to play with toys and regularly gave her full body massages. (She didn’t want to name the hospital because she believes any shortcomings were reflective of systemic issues, not specific to that hospital.)
Then, when the baby was finally released after 19 months in the NICU, Vasquez knew to call early intervention without delay. The family wasn’t more than five minutes into their drive home before she picked up her cellphone and rang them up from the back seat. “There was no second to lose,” said Vasquez, whose work as an early childhood consultant focuses on equity.
Within weeks of arriving home, the baby started upward of a half dozen different therapies, including speech, nutrition and mobility.
Partly because of the quick introduction to therapies, formal and informal, Vasquez’s daughter is thriving today at the age of 4. The girl had to spend only a few months in a self-contained classroom for children with severe disabilities before teachers said she was ready to join the “blended” class. It’s a milestone that seemed unreachable just a couple of years ago.
“After six months (in school), they said she is doing awesome,” Vasquez said. “I was told my child would need a wheelchair by kindergarten. She is running, dancing, chasing siblings, dancing on trampolines — all because of the amount of time we poured into therapies at a very young age.”
Physicians, advocates and families all agree that parents shouldn’t have to wait until leaving the NICU to begin lining up services. The coalition of groups working on the study recommend staff embedded at the hospitals who can help families enroll in early intervention before discharge. Each family who is automatically eligible would also leave the hospital with a legal document entitling them to therapy. “Our ultimate dream is to have the connection between [early intervention] and families be completed before they go home, and have the therapist assigned before they leave,” said deRegnier.
Many advocates also believe that for those babies on an extended stay in the hospital, those therapies should be available in the NICU. “Early intervention is birth to 3 — it shouldn’t matter if you are living in the hospital or at home,” Liddle said. “You are still entitled to those services.”
In Illinois, advocates say they hope to get funding to pilot a program at a few NICUs that would finally create the demonstration sites the Legislative Black Caucus called for years ago. If successful, the model could be expanded statewide. “Even if we are in one or two NICUs and can see how it turns out, that would be helpful,” says Illinois state Rep. Joyce Mason, who chairs the House committee focused on early childhood education.
In the meantime, too many families still find the crucial therapies to be elusive.
Even when Heath’s children finally started in-person therapy, it was limited in scope. The physical therapist, who Heath describes as an “angel,” quickly recognized that they should also be receiving other help as well, including speech and occupational therapy. Yet by the time the family worked through the bureaucratic machinery to get some of those in place, the boys were nearly 3 — close to aging out of early intervention. They received a few months of speech, but never got the occupational therapy they were entitled to.
If they had gotten the therapies earlier, “they would be in a different place at this point,” Heath says. The boys, who were diagnosed with cerebral palsy shortly before their fourth birthdays, struggle with speech and reading skills, in particular, with one of them requiring a device in order to express himself. “If you don’t know them well, it’s hard to understand what they are saying all the time,” Heath says. “If they had gotten all the services right off the bat, they wouldn’t be as far behind.”
Yet the triplets have long surpassed doctors’ early warnings that they might never sit up, walk or reach other developmental milestones. Newly arrived home from school on a clear fall afternoon not long before Halloween, the triplets, now in kindergarten and dressed as Spider-Man for “superhero” day, played exuberantly in a finished basement space. They cried out gleefully while zooming after each other in miniature bumper cars.
Heath is grateful her sons are progressing with the help of school, devoted family and the committed physical therapist, who still works with the boys. But she looks back at their first nine months and laments that, so focused on how to help the babies survive, no one in a vast team of doctors, nurses and social workers thought to discuss how the family could best help them thrive. “There was no next step for my family when we left the hospital,” she said. “It was all on us.”
Contact Sarah Carr at [email protected].
This story about early intervention services was produced by The Hechinger Report, a nonprofit, independent news organization focused on inequality and innovation in education. Carr is a fellow at New America, focused on reporting on early childhood issues.
