The AAC Access Gap: Population-Level Evidence of Underutilization of AAC Services Among Children in the United States

Abstract

While children with developmental delays and disabilities who are eligible for augmentative and alternative communication (AAC) services should receive intervention, many do not access these supports (Davidoff, 2017). Andersen’s Behavioral Model of Health Service Use provides a useful framework for understanding patterns of service utilization by considering environmental factors, predisposing characteristics, enabling resources, and perceived or evaluated need (Andersen & Newman, 1973; Lederle et al., 2021). The current study used Medicaid claims data from two states within the United States of America to examine AAC service utilization among Medicaid-enrolled children, including those involved in the child welfare system. Medicaid represents a major source of health care coverage for children with disabilities in the U.S. (Binger, 2007).  Additionally, the included states provide important contexts for this investigation because both have elevated rates of child maltreatment and foster care placement relative to national trends (Williams et al., 2024).

Data were drawn from the Child and Caregiver Outcomes Using Linked Data (CCOULD) project, which links child welfare and Medicaid claims data across the states of Florida and Kentucky. The sample included 45,082 children involved in the child welfare system and 59,072 children not involved in child welfare, all of whom were Medicaid beneficiaries and had at least one Medicaid claim related to developmental, speech-language, or AAC services. Variables extracted from Medicaid claims included sex, age, race, ethnicity, Medicaid managed care enrollment, Children’s Health Insurance Program enrollment, foster care status, Medicaid eligibility due to disability, and developmental diagnoses commonly associated with AAC use. Analyses included descriptive statistics, binary logistic regression, and decision tree machine learning algorithms.

AAC service utilization was strikingly low across children with and without child welfare involvement. Only 0.43% of children involved in child welfare (n = 194) and 0.47% of children not involved in child welfare (n = 272) had at least one Medicaid claim for an AAC-related service. The mean age of AAC service use was 7.6 years (SD = 3.6), and most who used these services were male (68.6%). Approximately half had a diagnosis of expressive language disorder/developmental language disorder (51.5%). Most children utilizing AAC services were enrolled in Medicaid managed care (92.8%), while relatively few were enrolled in CHIP (3.8%) or foster care (5.7%).

Several factors were associated with AAC service utilization. Children involved in the child welfare system had 28% lower odds of receiving AAC services than children not involved in child welfare (95% CI: 0.55–0.93, p < .05). Children enrolled in Medicaid managed care had 68% lower odds of AAC service utilization than those not enrolled in managed care (95% CI: 0.22–0.47, p < .001). Compared with children ages 0–2 years, children in all older age categories were more than 14 times as likely to utilize AAC services. Among diagnostic factors, children with cerebral palsy were nearly 4.5 times more likely to receive AAC services than those without cerebral palsy (95% CI: 3.30–6.11, p < .001). Race and ethnicity were not significant predictors of AAC service utilization.

Most notably, AAC service utilization was exceedingly low relative to estimated need. Less than one-half of one percent of children in the sample received an AAC-related service despite estimates that approximately 1.5% of individuals in the United States could benefit from AAC supports (Beukelman & Light, 2020). Among children with autism spectrum disorder, only 0.47% had a Medicaid claim for an AAC evaluation or treatment service (n = 136), despite estimates suggesting that 50–60% of individuals with autism may benefit from AAC (Rehabilitation Engineering Research Center on AAC, 2019). These findings suggest substantial unmet need for AAC services among Medicaid-enrolled children. Additionally, children ages 0–2 years appeared to be at greatest risk for not receiving AAC services, underscoring the importance of increasing awareness, referral, and provision of AAC within early intervention systems. Findings have important implications for improving equitable access to AAC services for children with communication disabilities across healthcare and service delivery systems.