Why aren’t we serving enough infants in early intervention

By

Carrie Gillispie

Babies with medical diagnoses and conditions with substantial risk of delay and disability are among our most vulnerable populations, yet too many of these babies and their families miss out on important early intervention (EI) services that could radically improve their long-term development. Children under age three who have or are at substantial risk for developmental delays and disabilities are entitled to EI services under Part C of the Individuals with Disabilities Education Act (IDEA Part C). However, the EI system is overwhelmed and underfunded. I spoke to Karen Berman, Senior Director of Illinois Policy at Start Early, about the unique challenges for babies under age one and their families in accessing EI services. This interview has been lightly edited for clarity.

Available data estimates that we areunder-serving eligible infants and toddlers and their families, and we are especially under-serving babies under age one. Has this always been the case?

Yes, we know that we have far more families and children who are eligible for EI services than we reach. Nationally, when we look at the data using a single point in time during a year, approximately 4 percent of infants and toddlers receive EI. If we look at it cumulatively over the course of a year we're serving about eight percent. But that's not true for babies under age one. Unfortunately, we're only serving about one percent of babies under age one in EI and that percentage really hasn't moved since IDEA Part C began. The majority of children are referred to EI services after eighteen months of age.

Given that there areover 600 different conditions and diagnoses included in state criteria, why aren't more babies in EI?

The good news is that once we break down which babies are being served in EI, we can come up with thoughtful strategies for how to increase the number of babies under age one that we're serving. It's important to think at the outset about how there are multiple ways that children become eligible for EI under the federal law (IDEA).

There are two mandatory categories of children who states must serve. One category is infants and toddlers who have a developmental delay or disability. States decide what percentage of delay that may be, or how many standard deviations from the norm that may be. The average for states in terms of what they set that at is around a twenty-five to thirty percent delay in a single domain or more or one to two standard deviations from the norm. The second mandatory eligibility category is children who have medical conditions and diagnoses where we know that if we don't intervene, those infants and toddlers will have a substantial likelihood of delay.

Some states also include an optional group of eligibility which is infants and toddlers and their families who may be at substantial risk for delay due to environmental or other considerations. Those may be things like involvement with the child welfare system, homelessness, or a diagnosis in the parent of a mental health concern. There is a smaller number of states who include this category. For example, Illinois is an "at-risk eligibility state" and one of our areas of automatic eligibility is if a parent has a mental health diagnosis or a developmental delay.

The vast majority of babies under age one will not be eligible under the developmental delay category because statistically babies under age one, and particularly babies who are born prematurely, are not going to have a twenty-five to thirty percent delay in a single domain before their first birthday. So then we say, aha, these are babies who are most likely to be eligible under the second category: due to a medical condition or diagnosis that has a substantial likelihood of delay. So now we have to ask, why aren't we serving these babies, given that we know the prevalence of such conditions and diagnoses is way above one percent of all infants under age one? And with the amazing medical advancements we are making in supporting babies born preterm to thrive, and advancements in early detection and treatment, we expect this population to grow. A number of reasons are contributing to our failure to serve these babies.

1) Eligibility Criteria

One reason is that some states don't include all medical conditions and diagnoses known to have a high risk of substantial delay in their automatic eligibility. Excluding children with known risks of substantial delay from automatic eligibility is short sighted since intervening early prevents or mitigates delays and disabilities. For example, some states only qualify babies who are born at extremely low birthweight and not low birthweight, even though we know so much about the substantial risk of delays and disabilities at low birthweight and the interventions that work to help these babies. Neonatal abstinence syndrome is another diagnosis we should be looking at more carefully. In the federal definitions of what medical conditions and diagnoses qualify for EI services, it says "disorders secondary to exposure to toxic substances, including fetal alcohol syndrome." When the law was passed, fetal alcohol syndrome was the "secondary exposure to toxic substances" that we were very concerned about. We are now facing an opioid crisis and we know that neonatal abstinence syndrome for babies, without appropriate intervention, can lead to delays and disabilities. Yet some states are qualifying babies with neonatal abstinence syndrome and some states are not. (See this map for state eligibility for these and related conditions). Lead poisoning is another such condition where we see this inconsistency (16 states include it as an eligible condition as of 2019).

We also need additional data to better understand the prevalence of babies with medical conditions and diagnoses with substantial likelihood of delay if we don't provide services. With all the advancements in science in supporting babies born pre-term and in how to do early detection and treatment, we expect this population to continue to grow. A recent study on the variability of diagnosed conditions across states and territories recommends that explicit linkages be made between the prevalence of diagnosed conditions and the receipt of EI services. This would support states in making decisions about which conditions to include on their lists as well as provide an opportunity for increased collaboration and coordination between public health agencies and EI systems.

These variances in how states define who they include in this eligibility category (children who have medical conditions and diagnoses) are not driven by research or science, and if driven by budgetary considerations, those are short term savings that will result in greater human and economic costs.

2) Lack of Awareness

However, that's not the only reason that we're still serving only about one percent of babies under age one. Even for medical conditions and diagnoses that are consistently included across all states, such as babies with Down syndrome, spina bifida, and cerebral palsy, we are still not seeing many of these babies receiving EI before they are one year old. Why? The second reason we may be under-serving these babies under age one in EI is due to a lack of awareness of this part of the eligibility criteria. We have heard from many referral sources, including doctors and early childhood providers, that they didn't realize that infants and toddlers could be referred to EI even if they didn't have a developmental delay already. While developmental screening is a critical Child Find strategy for EI, there are thousands of infants and toddlers who need and qualify for EI not based on developmental screening or the current manifestation of a significant delay. We must ensure that families and the providers who support them understand all of the eligibility categories and also understand what interventions are best to support these babies.

3) Access Barriers

A third reason that may cause us to under-serve babies under age one are the additional barriers that families who have babies with complex medical conditions may face in accessing EI. We need to ensure that our EI systems are better designed to provide the flexibility needed to accommodate babies whose conditions may require transitions in and out of hospitals and that providers have the training and support needed to best serve these babies. We often hear from providers that when babies don't yet manifest delays, they aren't certain of the interventions that would be effective to prevent delay, and we need to make sure that we are applying the advancements that are being made in early detection, diagnosis, and intervention.

Are there any bright spots or promising practices in Illinois?

We are excited about some efforts underway in Illinois and eager to connect with other states to make sure we are surfacing best practices and policies across the country. Here are some highlights of Illinois efforts:

Our Early Intervention Training Program has built modules that break down the different ways that infants and toddlers and their families are eligible for EI in order to build more awareness and use of the different eligibility categories. The state's referral form also highlights all of the eligibility criteria and includes a link to the list of medical conditions and diagnoses that have automatic eligibility for EI.

Illinois is currently exploring innovative approaches to address some of these disparities in enrolling babies under age one, following the Illinois Legislative Black Caucus introducing the Early Education Act in 2021 and the General Assembly recommending its implementation by 2022. The effort includes a research study seeking to seamlessly transition high-risk, Medicaid-eligible infants to home-based services immediately after neonatal intensive care unit (NICU) discharge and follow them through the process to begin EI services. The findings of this NICU-to-Home study show that the majority of study participants were not successful in connecting with the EI system by their three-month NICU follow-up visit despite being automatically eligible for services based on a clear medical condition/diagnosis. A policy advisory body of doctors, EI providers, and families are recommending that families get connected to EI before they leave the hospital by co-locating EI service coordinators in the NICUs to reduce delays in enrollment in EI. The video below gives a nice snapshot of this work.

We need to work together across health and early childhood public and private sectors, and in partnership with families, to ensure that we live up to the prevention goals of EI and not wait for infants and toddlers to experience delays and disabilities before we intervene. With greater awareness, training and support, and consistent inclusion of conditions known to create substantial likelihood of delay, we can move the needle on increasing the number of babies under age one in EI.

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