Smoothing the Path Between Primary Care and Developmental Services for At-Risk Children

Children who need community resources to help their health or development frequently get those resources through referral from the primary health care system. Receipt of resources in the United States is often a multistep process, which can be especially confusing for those who need it most, including families with health-related social needs, those who speak a language other than English, and those without experience in navigating complex systems. This situation is exacerbated for receipt of developmental services, which are often administered at multiple levels: state, county, and school district, each with differing eligibility criteria. It is no wonder that the pathways families follow to get their children needed services have multiple detours, slowdowns, and dead ends.The problem is well known, but few feasible, generalizable solutions have been described. Prior work by Nelson and colleagues1 engaged 4 community practices serving high-need populations and the Los Angeles County 211 system (211 LA) in a collaboration to better identify, refer, and connect families with developmental services. This randomized controlled trial smoothed the referral and service pathway. The intervention improved both developmental referral and service acquisition rates and referral to early care and education after 6 months, especially for children at moderate and high risk of developmental delays. Now, in this issue of Pediatrics, Nelson and colleagues2 have continued their evaluation of children in the trial, showing continued success after 2 years, in addition to new data showing faster time to receipt of services for children in the intervention group.The intervention incorporated the guideline-concordant developmental screening and referral already in place within the practices and a model of screening, referral, and early childhood care coordination developed in 2009 by the 211 LA system. Practices participating in the study conducted routine developmental screening, had access to referral assistance through their internal systems, and, of course, were not prohibited from connecting children and families to evaluation and services through publicly available channels. During the study, for children in both intervention and control groups, a validated developmental screen was administered and scored, and a summary of results was provided to the child's primary care provider. Thus, the control group in this study already received high-quality services, making the positive outcomes in the intervention group more compelling.The intervention group additionally received a "warm handoff," or a joint phone call between the study research assistant, the family, and the 211 LA care coordinator, at which time families were referred for services based on their child's degree of risk estimated from the screener, and family contact and other information was shared. The 211 LA care coordinator then connected families to evaluations and services and relayed plans back to the primary care provider's practice. The care coordinator also maintained contact with the family for at least 6 months and up to 28 months depending on the child and family's level of need. The key components of the intervention—a warm handoff from practice to 211 LA, bidirectional communication between 211 LA and the practice, and continued contact with the 211 LA care coordinator—were likely all essential to the improvements seen in receipt of developmental services. This approach is also very consistent with the goal of "integrated care"3 for children and youth with special health care needs, a substantial part of this study's population.The primary study outcomes were referral to and enrollment in developmental-behavioral (DB) services. These outcomes were examined separately, allowing some examination of the effectiveness of processes involved. DB services could include several types of services depending on a child's needs: early intervention (Individuals with Disabilities Education Act Part C), early childhood special education (Individuals with Disabilities Education Act Part B), therapies (physical/occupational/speech/behavioral), applied behavioral analysis, or others. The 211 LA system was uniquely positioned to be a partner in this work, as they could assist families in accessing all these service sectors, for which individual intake and evaluation processes tend to differ. Secondary outcomes were less dependent on the presence of developmental risk and included referral to and enrollment in early childhood education programs.Study results were quite positive and interesting in their differential effect on primary vs secondary outcomes. The retention rate of 88% over 2 years was remarkable, enabling an accurate assessment of the intervention's medium-term effects. The study population overall had a high prevalence (35%) of moderate or high risk for developmental delay. Although the primary outcome of referral to DB services, which was statistically more likely at 6 months in the first paper, fell just short of statistical significance at the 24-month follow-up time point, the intervention continued to have a positive effect on enrollment in DB services, especially for those at high and moderate risk who are most likely to need services. The continued difference between groups in enrollment, but not referral, suggests that primary care practices were relatively better at referring than enrolling children in services; this makes sense, given the greater effort and potential detours in the pathway to receipt of services once a child is referred. Children in the intervention group also received DB services more quickly than those in the control group, with the difference noted primarily in the first 12 months of study enrollment. Taken together, these results suggest that practices tend to "catch up" somewhat in recognition of developmental risk over time but that the 211 LA intervention is particularly good at getting children who most need services connected to them in a timelier way.The secondary outcome of connection to early care and childhood education was also improved by the intervention, although there were no differences by developmental risk categories. On close examination, the improvement with the intervention was seen in referral to, rather than enrollment in, these services, as the fraction of those enrolled once referred was not different between groups. This suggests that the intervention's impact on early care and education was mainly to give families the information they need to enroll their child, and the process of enrollment was mainly driven by families themselves. This difference was suggested by the authors in the article's discussion and is likely true.In addition to the longitudinal nature of the study, one of its greatest strengths is the pragmatic nature of its design, increasing its generalizability to other practice settings. Almost all children within a relatively broad age range (12–42 months) in multiple practices were eligible, and the intervention involved only a small change within a system whose components are present in multiple areas within the United States. It would have been even better if the study team were able to assess the costs of the intervention, primarily the time it took for 211 LA care coordinators to work with families, to estimate the cost per child connected to services. Of course, assessment of developmental outcomes between groups would have been ideal, but given the wide range of developmental risk and wide age range among enrolled children (and, hence, a wide range of developmental trajectories), this comparison would be statistically and logistically very difficult. An additional qualitative study of families and practitioners, to validate and/or provide additional context to the intervention's role in the referral process, could also be helpful to inform potential adoption of the study's activities elsewhere and serve as part of dissemination and implementation research for this type of intervention. It is wonderful to see the effectiveness of this generalizable and likely feasible intervention that has real potential to decrease health disparities in the pathway toward developmental services.