Diversity, Equity, and Inclusion in Early Intervention – Determining Eligibility Part 1

Image courtesy of Pixabay.com

I’ve written previously about some of the things that concern me about early intervention (EI) – at least the way I’ve experienced its practice and implementation. This includes using practices like separating the part from the whole to teach phonology, morphology, and semantics at these young, critical language development stages and the recommendations that overwhelmingly emphasize receptive language over expressive language, the families’ primary complaints about the child’s expressive language notwithstanding.

I’ve referenced the lack of DEI in early intervention in these previous posts. Now, it’s time to get into these weeds. I’m going to stick to the evaluation process in this post.

Let me begin by clearly stating that I really believe the (primarily white, middle-class) women who work in EI are sincere in their desire to help young children and their families. I have seen their dedication first hand. I know they are motivated by a desire to help young children and their families.

But, they would be much better served by recognizing the implicit biases built into the parent education early education model suggested to families. In other words, EI needs to get woke. About a lot of things.

I recently read this quote about implicit biases from Jennifer Imazeki, the Director of the Center for Teaching & Learning and Associate Vice President for Faculty & Staff Diversity at San Diego State University on teaching in higher education:

“It is not about changing the bias or stopping the bias.

It is about getting in between your internal reaction and your external reaction.”

Yep. Exactly. This is as true for EI as it is for higher education.

Let’s start at the beginning. States are charged with running early intervention programs that identify children at-risk for developmental delays between the ages of 0-3 years and provide intervention and supports to the family unit as a whole through the Individualized Family Service Plan (IFSP). Young children can be eligible for these services through 3 mechanisms:

  1. Auto-eligible: these are conditions present at birth and include issues like prematurity, Down syndrome, known drug exposure at birth, etc.
  2. A delay of 50% in 1 of 5 developmental areas based on chronological age: The 5 areas are: communication (use & understanding of language); cognition (e.g., memory & problem solving); social-emotional (e.g., social interactions w/ parents, siblings); physical development (gross and fine motor development); and adaptive behavior (e.g., self help skills like dressing, feeding, & toileting).
  3. A delay of 25% in 2 or more areas based on chronological age

Federal and state mandates require that we formally evaluate young children’s skills in these domains. Formally evaluate means use standardized tests that generate numbers, then compare those numbers to what’s expected at certain ages to determine eligibility for services. There is an additional option for ‘informed clinical opinion’ for children/families who may not exactly meet the numbers, but for whom the team feels intervention is warranted.

In the EI system in which I work, the lack of DEI begins right here.

The primary protocol used has several problems. The way in which the data are used to determine eligibility has more.

The most recent update of the primary protocol was published in 2012, meaning the data were collected aorund 2010. It’s 2021. A lot of things have changed in 10+ years. That’s a problem in and of itself.

More specifically, for children born prematurely, there is no way to account for adjusted age. For those of you who don’t know, in the United States, it’s considered best practice to adjust for gestational age until the age of 2 years. That means if a child was born at 28 weeks gestation (3 months early), then their development should be judged on the date they should have been born (gestational age), not the date on which they were born (chronological age). Let me give a recent example. A baby was born 10 weeks early to a mom who died of COVID-19 complications. She spent 6 weeks in the NICU, then went home with her widower father and older brother. Dad requested an EI evaluation with a primary concern of feeding around the time of her actual due date. We evaluated this baby 5 days before her due date, but we had to document a chronological age of 6 weeks on the primary protocol. She looked like what she should have been – a healthy newborn asleep in her carrier, not an almost 2 month old infant. It turns out that dad’s concern was that she was feeding every 3 hours, taking a total of 24-32 ounces of formula during the day (older brother was able to go longer between feedings and dad thought something might be wrong). But, because this baby was being judged against her chronological age of 6 weeks rather than her adjusted age of not-quite-in-the-world-yet, delays of more than 25% in cognition and physical development were reported in addition to her prematurity. Put yourself in this dad’s position for a moment. He just lost his pregnant wife to COVID-19. His daughter was born prematurely as part of his wife’s battle with COVID-19. He was concerned about his daughter’s feeding schedule. And, now he’s being told that his daughter has cognitive and physical development delays which were determined on the basis of an outdated protocol that does not allow examiners to calculate scores using adjusted age. It turns out most premies who are evaluated with this protocol within their first 3 months out in the world demonstrate these ‘delays’ because we can’t use adjusted age when calculating the all-important numbers. How is this equitable? How can this practice be justified?

Secondly, this protocol is English only – and Mainstream American English (MAE) only at that. There is nowhere on the protocol to document what language(s) or dialect is/are spoken in the family home. Yet, this protocol is administered to increasing numbers of young children who are not learning English, English as their first language, or MAE. Culture, parenting practices/styles, and SES level all affect how children experience and learn language. Receptively, this protocol relies heavily on parents’ and children’s responses to display questions. Display questions are those adults ask of children where both the child and adult know the answer(s) – things like, “Where’s your nose?” or “Where’s the ball?” when looking at pictures. The use of display questions is primarily a middle-income, mainstream culture phenomenon. Many children growing up in culturally and linguistically diverse (CLD) communities have no experience with these types of questions and don’t understand why adults would ask questions to which they already know the answers. Child directed speech (CDS or “motherese”) is also primarily a mainstream culture, middle- and upper-income phenomenon. Yet, there is a question on this protocol that asks if toddler/preschool age children engage in this specific cultural practice. There are questions that ask about a child’s ability to use ‘can’t’ and ‘don’t’ – grammar constructions that don’t exist in Spanish, for example. There are other questions that ask about the use of plural -s. That construction is present in Spanish (e.g., el hombre, los hombres), but isn’t present in many Asian languages like Mandarin and Japanese (where it’s marked by the counter or number word preceding the noun – e.g., two cookie). There are other questions about a young child’s ability to follow directions using in/on. English makes a distinction between these two prepositions, but Spanish doesn’t. In addition, research has shown that different prepositions are acquired in different orders in different languages. There is a slightly different pattern of typical acquisition for children who are learning 2 or more languages, but this protocol does not take that information into account. Granted, because of my research background and interests, I know more about linguistic differences and acquisition patterns than most practicing SLPs. But, all SLPs graduating from accredited programs learn that clients should be evaluated in their dominant language with tools that are appropriate for evaluation purposes. Where is the diversity and equity in the evaluation process for children and families who are from CLD backgrounds? Why isn’t there more complaint from SLPs and other practitioners about these tools to determine eligibility?

A perusal of the examiner’s manual indicates that responses to a subset of 20 items were statistically significantly different between children who identified as African American and non-AA children across the 5 domains. It should be noted that 7 of these items (35%) were from the cognitive domain. To put this in perspective, a total of 7 items had statistically different response patterns between boys and girls (none of which were in the cognitive domain) and 5 items (3 of which were in the cognitive domain) were statistically significantly different between children of Hispanic heritage and non-Hispanic children. Is it just me, or does this sound like something that should be investigated further? Is it possible that these 20 items are implicitly biased in some way?

These are just the issues with the content of protocol itself. We’ll get into the antiquated and statistically unsound scoring practices used to determine eligibility in the next post.

When I brought up these issues, the response I received was essentially, “Well, EI is a voluntary program that is free to families. What’s the harm in putting families in the program? They can always decline the services later.”

Umm…two major issues immediately come to mind here. Let’s start with the fact that a team of early education professionals is telling parents there is a problem with their child’s development. This decision is based on a questionable evaluation model, especially for children from CLD backgrounds. Parents grant the team authority to complete the evaluation and assume the professionals know best – therefore, there must be something wrong with their child. Let’s continue. EI is under strict timelines as far as determining eligibility and providing recommended services goes. This blanket policy of finding almost every family eligible for some degree of service puts a lot of strain on an already strained system. EI may be a federally mandated program, but its funding comes each state. The charge for services provided by EI is billed to the state. One would think states would be at the forefront of ensuring only those children who truly are in need of services receive them as a cost saving measure for taxpayers.

This post is already longer than I originally intended, so I’ll stop here. What are your thoughts? As always, thank you for reading and I look forward to your comments/reactions.

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