Disparities in Early Intervention Program Participation by Children With Autism Spectrum Disorder in a US Metropolitan Area, 2006 to 2016

Shenouda, Josephine; Barrett, Emily S.; Davidow, Amy L.; Sidwell, Kate; Halperin, William; Silenzio, Vincent; Zahorodny, Walter

doi:10.1001/jamapediatrics.2022.2366

Cited by 17 publications

(5 citation statements)

References 32 publications

(78 reference statements)

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“…More specifically, Black families reported a lower likelihood of having received EI services. This finding is largely consistent with literature demonstrating that Black children experience a number of disparities in accessing autism services, and EI services specifically (Constantino et al, 2020;Shenouda et al, 2022). However, we now know that these disparities are present within broader systems of care that support children prior to an autism diagnosis.…”

Section: Discussionsupporting

confidence: 88%

“…Research suggests that 88% of children enrolled in Part C, EI go on to receive Part B services (i.e. special educations services), whereas only 46.5% of children with developmental delays receive Part B services if they were not previously enrolled in Part C EI services (Shenouda et al, 2022). Therefore, missing the opportunity to enroll in EI services can have long-term effects in the enrollment of and access to special education services after children turn 3 years old.…”

Section: Discussionmentioning

confidence: 99%

See 1 more Smart Citation

Access to Part C, Early Intervention for children younger than 4 years evaluated for autism spectrum disorder

Mendez,

McQueen,

Gillespie

et al. 2024

Autism

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Despite consensus on the importance of early detection and intervention for autistic children, health disparities exist, limiting access to timely services. One specific service type in the United States is Individuals with Disabilities Education Act, Part C Early Intervention programs, which are federally funded interventions for children birth-to-three with developmental delays. This study aimed to assess access to Part C, Early Intervention services for children who were evaluated for autism spectrum disorder and to examine factors that predicted parent-reported access to these services. This study extracted sociodemographic and service access data from the medical records of 709 children aged 12–40 months who were evaluated for autism spectrum disorder. Results showed that only 50% of the sample had reportedly accessed Part C, Early Intervention services. Those who identified as Black had decreased odds of having accessed Part C, Early Intervention, relative to those who identified as White, while those with a lower age of first parent concern had increased odds of having accessed Part C, Early Intervention. When inputting the independently significant variables into the model, both variables, identifying as Black and a lower age of first concern, remained significantly associated with accessing Part C, Early Intervention. Future work should investigate how these disparities come to be. Lay abstract Health disparities are defined as preventable differences in the opportunities to achieve optimal health outcomes experienced by marginalized and underrepresented communities. For families with autistic children, health disparities limit accessing early intervention services—which have been found to improve quality of life and other outcomes. One specific early intervention service in the United States is Individuals with Disabilities Education Act, Part C Early Intervention programs, which are federally funded interventions for children birth-to-three with developmental delays. This study adds to this topic by examining which factors impact accessing Part C, Early Intervention services for children who were evaluated for autism. Results showed that only half of the sample received these services despite there being concerns about development for all children. In addition, results showed that those who identified as Black had decreased odds of having accessed Part C, Early Intervention compared to those who identified as White. These results suggest that there are disparities when it comes to accessing important early intervention services that may be negatively impacting the Black autistic community.

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Section: Discussionsupporting

confidence: 88%

Section: Discussionmentioning

confidence: 99%

Access to Part C, Early Intervention for children younger than 4 years evaluated for autism spectrum disorder

Mendez,

McQueen,

Gillespie

et al. 2024

Autism

View full text Add to dashboard Cite

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“…Finally, our qualitative sample was lacking in racial-ethnic diversity and single-parent families. Future research emphasizing the intervention experience for families from a variety of marginalized backgrounds (e.g., socioeconomically disadvantaged families, linguistic minorities, immigrant families, minoritized racial/ethnic groups) is essential for understanding the fit of Project ImPACT for diverse families and to avoid reproducing systemic inequities in service access (e.g., Shenouda et al, 2022) in the context of the intervention itself.…”

Section: Discussionmentioning

confidence: 99%

Mapping the Active Ingredients and Mechanisms of Change of a Naturalistic Developmental Behavioral Intervention Using Mixed Methods

Frost,

Ingersoll

2023

Journal of Early Intervention

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Limited research has examined the active ingredients and mechanisms of change of naturalistic developmental behavioral interventions (NDBIs). The present study used an exploratory sequential mixed-methods design to develop a comprehensive Theory of Change of Project ImPACT, an empirically supported NDBI. We used qualitative data from interviews with intervention experts ( n = 10), community providers ( n = 22), and caregivers ( n = 12) to develop a comprehensive causal model of the intervention process. We then tested select paths of the causal model using path analyses with an archival dataset ( n = 92). The causal model described how developmental techniques aimed at supporting children’s attention and engagement lay the foundation for more adult-directed learning opportunities and subsequent child skill growth. However, hypothesized causal relationships were not supported by our quantitative analyses. In the future, this research can be used to develop and prioritize nuanced research questions related to the timing, optimization, and mechanistic process underlying NDBIs.

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“…This situation risks placing financial pressure on families and accentuating inequalities among children based on their parents’ ability to pay. Some characteristics, including low socioeconomic status and ethnic minority, place some people at higher risk of encountering barriers to health care ( Fujiwara et al, 2022 ; Salloum et al, 2016 ; Shenouda et al, 2022 ). Although children and families with the greatest need for services are known to encounter the most structural barriers to accessibility ( Human Early Learning Partnership, 2013 ; Institut national de santé publique du Québec, 2014 ), it is crucial to facilitate access to services at the right time for all families with needs if we are to really build their capacities without overloading them.…”

Section: Discussionmentioning

confidence: 99%

Building Families’ Capacities: Community Forums with Parents and Occupational Therapists

Grandisson,

Martin-Roy,

Marcotte

et al. 2023

Can J Occup Ther

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Background. Parents of a child considered to have special needs are at greater risk of stress and exhaustion. Although many occupational therapy interventions can help these children, they often require significant time and energy from families. Purpose. To document the perspectives of parents and occupational therapists regarding ways to offer services that help build families’ capacities without overloading them. Method. A qualitative descriptive design guided online community forums with 41 parents and occupational therapists in Quebec, Canada. Findings. Nine key principles to build the capacities of families without overburdening them were identified. These include being sensitive to possible negative impacts of services, avoiding overwhelming the family with information or recommendations, taking the needed time, highlighting the positive, and offering flexible conditions for services. Implications. Our findings help identify how capacity-building rehabilitation services can be offered to families to optimize positive outcomes and minimize harms.

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Disparities in Early Intervention Program Participation by Children With Autism Spectrum Disorder in a US Metropolitan Area, 2006 to 2016

Cited by 17 publications

References 32 publications

Access to Part C, Early Intervention for children younger than 4 years evaluated for autism spectrum disorder

Access to Part C, Early Intervention for children younger than 4 years evaluated for autism spectrum disorder

Mapping the Active Ingredients and Mechanisms of Change of a Naturalistic Developmental Behavioral Intervention Using Mixed Methods

Building Families’ Capacities: Community Forums with Parents and Occupational Therapists

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