Care eligibility is not the same as access

While a recent study reveals the U.S. leads the world in health-care spending, we hardly talk enough about directing our spending to ensure access to essential care. Especially when it comes to access to crucial interventions and therapies in early infancy.

As a neonatologist in the NICU and in the follow-up clinic at Lurie Children’s Hospital in Chicago, I know the importance of developmental therapies in optimizing a preterm infant’s maximum potential.

{mosads}However, I also witness barriers that delay these therapies, when services that should be accessible to all infants who need them are inaccessible or simply too difficult to access. The medical profession can do a lot more, by thinking of creative solutions to help infants smoothly transition from the critical time of the NICU into getting care and interventions in the home.

Recently in the NICU developmental follow-up clinic, I worried about a 9 month old baby, born prematurely at 30 weeks. At first glance, she looked healthy enough, she was clean, and perfectly content. But she was unable to roll, sit, or pick up toys — skills that should have been emerging at this age.

Indeed, the baby qualified for services just fine — physical, occupational, and speech therapies — but weeks had passed without initiation of therapy, missing visits to the ophthalmologist and cardiologist, due to her parents’ difficulty with timing and transportation.

Later that day, we made phone calls and wrote emails on her behalf, but being qualified to receive care and being able to access it are not the same, not to mention the considerable effort required for parents to navigate the process.

A large body of literature shows that developmental intervention programs have a positive influence on cognitive and motor outcomes during infancy, with cognitive benefits persisting into school age. In Illinois, for example, the Early Intervention program provides free services to children with developmental disabilities or delays. Trained therapists go to children’s homes for sessions on a regular basis, periodically evaluating for continued needs, up to 3 years of age.

But accessing and navigating these services is not simple. Generally, setting up a care program may take initial appointments during business hours to receive referrals followed by phone calls to initiate contact with the service coordinator, finding a therapist in the area and scheduling sessions in the home or daycare. But for parents with full time jobs, or for whom English is not a primary language, navigating this, much less during working hours, can be exhausting, can compromise workplace performance, and, can simply be impossible.

Indeed, some families can afford to hire private therapists to come to their homes and pay out of pocket, therefore initiating therapies early. Some have the means to make several trips a week to our children’s hospital downtown or to others like it, and pay for parking that can cost up to $30 a day.

Yet, the reality is that most families probably could not afford this, even if they are not necessarily in the low-income bracket. For other families living in disadvantaged neighborhoods with high rates of crime, getting a therapist to even come out to their home can be difficult.

And even with appropriate therapies, some children will remain delayed, and parents may opt out of therapies against recommendations. Developmental delays are not life-or-death issues; time and resources are rightly allocated to other urgent health needs of the community, like flu shots and prenatal care.

But missing therapies can be a difference in learning or not learning the skills to walk, speak, and succeed in school. Ensuring timely intervention to preterm infants, vulnerable to so many physical and cognitive challenges is surely an important priority that, ultimately, will decrease financial costs to society.

These access disparities are not new and there are local communities dedicated to narrowing these disparities. Grassroots networks of organizations are tackling disparities in infant outcomes and pilot projects are in the works to help communities themselves measure early childhood development and to develop action plans. Even so, the inequality in access is a reality for which there is no easy solution.

As health professionals, we must be actively advocating for continued federal and state funding to commit to providing free developmental services to all children with disabilities. We must implement transition-to-home programs and collaborate with families, social workers and primary care providers in the community.

Before hospital discharge, we must make sure that parents, in transitioning to full-time caregiver responsibilities, are provided education and psychosocial support to gain emotional comfort and confidence with infant care. Further, we must ensure that there will be adequate transportation and scheduling to access appointments, and confirm enrollment in developmental intervention programs, even before going home.

Such programs have been successful in reducing re-hospitalization rates of the littlest infants, especially for those on public insurance. After all, these babies survived countless hardships, just to make it out of the hospital. It remains our responsibility to look out for them — all of them — long after they have made it home.

Nana Matoba, MD MPH, is an assistant professor of pediatrics in Northwestern University’s Feinberg School of Medicine, a neonatologist at Ann & Robert H. Lurie Children’s Hospital of Chicago, and a Public Voices Fellow through The OpEd Project.