Overall, we found significant gaps at each step of the EI referral-service delivery process. Among infants and toddlers with developmental delay or disability receiving care in a safety net health system, only 18.7% were EI-referred and only 26.3% of those EI-referred accessed EI (net access rate of less than 5% of all eligible children). Moreover, service type and breadth was associated with child’s income, diagnosis, and baseline function.
EI Referral Gaps
A main finding of this study is that BNH children were less likely than their WNH counterparts to be EI-referred. While the reasons behind racial differences in EI referral are not explored in this study, these disparities in access have been reported.[3] A recent systematic review[29] of such research suggests that racial differences in care stem, in part, from differences in provider behavior. Providers tend to dismiss parental developmental concerns and abnormal developmental screening results and attribute them to social rather than clinical risk for BNH families compared to WNH, which could translate to fewer EI referrals.
The second main finding of this paper is that children with diagnosed conditions were less likely than their peers with a developmental delay to be EI-referred after accounting for condition severity. It may be that children with diagnosed conditions are being referred to specialty clinics more often and receiving care outside of EI.[30] In fact, one study found that half of birth to three year olds with a developmental condition receive clinic-based therapy services.[31] Additionally, children with more severe conditions are more likely to receive an EI referral regardless of their condition type. These findings highlight the clinical complexity of EI-eligible children and suggest that children most likely to receive an EI referral are those whose condition aligns with federal and CO-EI eligibility (e.g., developmental delay, extremely low birth weight, and high need special healthcare conditions).
EI Access Gaps
The third main finding of this paper is that, compared to infants, 2-year olds are less likely to receive an IFSP. While this study cannot examine causality and there are limited comparable findings, it suggests caregivers of 2-year olds with developmental concerns need tailored support to navigate the EI system, especially since they typically interface less with primary care and have a shorter time window to access EI.
While we have limited comparisons for EI access findings, one study found that 30-50% of EI-referred children receiving care in urban pediatric practices received an EI evaluation,[11] fitting with 31% in our sample (Figure 1). Moreover, we found that children with greater condition severity were more likely to access EI and that the majority of our cohort had a developmental delay (versus established condition), also consistent with previous literature. [5, 29]
Reasons for access gaps may be numerous, and have been explored in previous studies.[15, 16] Future research should engage EI stakeholders (pediatricians, EI providers and parents) to understand EI enrollment barriers as previous research suggests that increasing family engagement[15] and implementing cross-system strategies such as centralized referrals and patient navigators can bolster EI enrollment.[16]
EI Service Type Gaps
We found EI service use gaps among the poorest cohort children. In this safety net population, higher income may be a marker for greater economic resources, knowledge, or capacity to advocate for PT and OT and future research should explore EI therapy barriers and facilitators.
We also found that having a diagnosed condition (versus developmental delay) was associated with higher likelihood of receiving a greater breadth of EI services. While having a diagnosis seems to trigger an EI referral less often, once these children access EI they receive a greater breadth of services than their peers with developmental delays. Future research should focus on therapy use among EI-enrolled children as previous literature is mixed with regard to service type disparities.[32]
This study also examined the association between routinely collected global measures of children’s function and EI service use. Baseline functional skills were associated with core EI service use in expected directions, suggesting baseline COS scores may be a good marker of EI therapy need. For example, children with higher social-emotional function likely have less need for DI, which focuses, in part, on promoting social skills.
Limitations
The data were ascertained from one health system and EI program. However, Denver Health serves as medical home to 50,000 low-income children in Metro Denver and RMHS serves approximately 2/3 of Metropolitan Denver EI-eligible children. Thus, although results may not be generalizable to the general EI-population, they are applicable to lower-income, urban, EI-eligible children; and in fact, nearly 50% of EI-enrolled children nationally are low-income.[5] Related, the prevalence rate of children with developmental conditions in this sample (14,710/50,000=29.4%) is comparable to national estimates of low-income infants and toddlers with or at risk for developmental delays.[33] We were unable to examine reasons for EI referral (i.e., beyond a diagnosis), EI care quality, parental concerns, or capacity to navigate or advocate within the EI system. Previous research suggests that low EI enrollment rates can be explained, in part, by families who refuse services or do not follow up on EI referrals,[15] and families play an integral role in accessing EI services. Finally, we assume that children who received diagnostic code consistent with EI-eligible conditions in CO are, in fact, EI-eligible. However, we have no way to confirm this among the children who did not receive an EI evaluation. Yet, if pediatricians document a developmental delay in a child’s medical record, it seems plausible that developmental follow-up or referral is warranted. Additionally, Colorado eligibility for EI stipulates that a child has a 25% or greater delay in one or more developmental areas[25], and in this study we found that very few children who received an EI evaluation were found ineligible (Figure 1). Future research should conduct qualitative interviews with providers and parents to understand care quality, including shared decision-making, and EI service gaps.
Strengths
To our knowledge, this is the first study to link pediatric primary care and EI records to examine EI service use among a low-income EI-eligible cohort. We found differences in receipt of EI therapy services by condition type, income, and baseline function. These findings have important implications for EI providers, program directors, and policy makers for improving outreach and care planning. The methods of this study can serve as a model for leveraging electronic health data to examine EI service use gaps with an eye toward improving access, service use patterns, and functional outcomes.
Our findings of the prevalence of developmental delays is well aligned with national estimates of the prevalence of children at risk for developmental delay in low-income settings.[33] We also found that most children receiving EI services are doing so because of a developmental delay, rather than a diagnosed condition, which also matches previous findings[34] and bolsters the validity of our results. Moreover, our EI-referral rate of 18.7% is consistent with previous literature examining developmental follow-up for urban children with a failed developmental screening,[10] suggesting generalizability to similar populations.