Analysis of the SPARK study COVID-19 parent survey: Early impact of the pandemic on access to services, child/parent mental health, and benefits of online services.
Bhat A. Autism Res. 2021;14:2454-2470. [PMID: 34591364]
Early COVID-19 service disruptions affected children on the autism spectrum and their families to varying degrees, showing the need for in-person, virtual, or hybrid healthcare and family support services based on family preferences and needs.
Background: At the beginning of the COVID-19 pandemic, school and clinic closures dramatically decreased families' access to services for their autistic children. Some services temporarily disappeared, while others transitioned to a virtual-only model that did not work well for all autistic children. In addition, family caregiving demand increased as children lost opportunities for in-person socialization. This study examined the early impacts of these service changes on autistic children and their families. It identified which groups of autistic children experienced the greatest loss in services and the greatest negative impact on emotional and mental health.
Methods & Findings: Parents of autistic children participating in the Simons Foundation Powering Autism Research for Knowledge (SPARK) study completed a questionnaire between March and April of 2020. Responses received revealed that the three most severely impacted support services during the COVID-19 pandemic were speech-language therapies, special education, and physical or occupational therapy. Low-income families experienced greater reductions in care compared to higher income families. For approximately half of children and three-quarters of caregivers, the early weeks of the pandemic had a moderate to severe impact on mental or emotional health. In addition, parents reported that their children experienced more intense emotional and behavioral challenges when only online support services were available. Parents expressed mixed feelings about these virtual services: approximately equal numbers reported that online services were very helpful (14%) or not helpful (19%). Families with older children and children with fewer support needs benefited more from online services, as did children with more repetitive behaviors who had not previously received online services.
Implications: These results provide data supporting a need for improved care access for autistic children, especially in the event of future COVID-19-related closures or other public health emergencies. This study provides evidence of the negative impact of reduced access to services and provides motivation for further research on this issue. In addition, it suggests that clinicians should assess children and families' needs and circumstances prior to recommending virtual or hybrid healthcare models. When possible, virtual services and supports should be used for those children who are most likely to benefit, and in-person services should be employed with effective safety precautions (e.g., mask wearing, surface and toy sanitization) when deemed more likely to be beneficial. To ensure that families can access the care that best suits their needs, parents and caregivers require greater education about and access to insurance coverage for family support services such as respite care – especially parents whose children have high support needs.
Who gains and who loses? Sociodemographic disparities in access to special education services among autistic students.
Sturm A, Williams J, Kasari C. Autism Res. 2021;14:1621-1632 [PMID: 33904253]
Autistic students experience racial and income-based disparities in special education eligibility and school-based services.
Background: In areas with majority White and high-income families, students accessing special education services are more likely to have a diagnosis of autism than a diagnosis of intellectual disability or a specific learning disability, such as dyslexia. The opposite is true in areas with mostly non-White and low-income students (i.e., students are more likely to have a diagnosis of intellectual disability or specific learning disability than autism). Notably, these demographics are also correlated with differences in school funding and accessibility of health-related services (e.g., speech and language, occupational therapy). This study examines how school-based special education service use differs based on diagnosis, race, and income.
Methods & Findings: Researchers used data from administrative records of a large, predominantly Hispanic/Latino school district in Southern California. The researchers considered students who were eligible for special education services based on a diagnosis of either autism, a specific learning disability, or an intellectual disability. Of those students, autistic children received the most school-based services on average, as well as the greatest variety and frequency of services. Children with specific learning disabilities were most likely to be mainstreamed (schooled in general education classrooms alongside students without disabilities) at least half of each school day. Lower-income children received fewer school-based services on average than higher-income students. White students who were eligible for services due to autism received more services on average than students of any other race/ethnicity. Hispanic/Latino students received the fewest services, even though they made up most of the student population in the school district being studied. Race- and income-based differences in service use were greater among autistic students than among those with learning or intellectual disabilities.
Implications: The results from this study suggest that students who are from lower income families or who are racial or ethnic minorities have a harder time accessing school-based special education services. Students from underrepresented, under-resourced, and underserved backgrounds likely have access to fewer resources such as advocates and information to aid in navigating the processes of identification, referral, and service allocation. In addition, the scale of inequities differs based on the specific diagnosis children receive. Autistic students experience the highest proportion of racial inequities. Inequities in accessing special education services and supports may depend in part on families having both the resources and knowledge to successfully navigate the complexity of the education system. These resources and knowledge are less common among families of color and families with lower income. The findings of this study suggest the need for additional focus and enhanced services and supports for under-resourced students of color.
Healthcare Costs of Pediatric Autism Spectrum Disorder in the United States, 2003-2015.
Zuvekas SH, Grosse SD, Lavelle TA, Maenner MJ, Dietz P, Ji X. J Autism Dev Disord. 021;51:2950-2958. [PMID: 33113106]
Autistic children have between $3,930 to $5,621 more in annual health care costs than non-autistic children.
Background: Previous research studies have worked to identify healthcare cost estimates for autistic children. These estimates have varied widely, from $3,398 to $7,454 per year in 2018 dollars (i.e., adjusted to the value of the dollar in 2018). Estimates have varied in part due to different data sources and different inclusion criteria. Few studies have evaluated the differences in healthcare expenses between children with autism and those without autism. The current study provides updated estimates for the difference in healthcare costs between U.S. children on the autism spectrum compared to non-autistic children.
Methods & Findings: The researchers used 2003-2015 data from two ongoing federal surveys (the Medical Expenditure Panel Survey (MEPS) and the National Health Interview Survey(NHIS)) to determine the annual healthcare costs of autistic children aged 3-17 years. Annual estimated costs were determined for children ever diagnosed with ASD (based on parent response to the NHIS) and children with ASD-related costs in the year of interest (based on responses to the MEPS). The researchers found that the estimated healthcare cost difference between autistic and non-autistic children was $5,621 using MEPS data and $3,930 using the NHIS-derived measure of ever being diagnosed with ASD (in 2018 dollars). These estimates were lower than those that have been reported in other previous studies but still represent substantial costs to the healthcare system. The researchers calculated that, from 2013 through 2015, Americans spent approximately $3.9 billion in 2018 dollars annually on childhood autism-related costs.
Implications: This study calculated two estimates for the healthcare costs of autistic children. Both estimates support the conclusion that children with autism incur substantially greater healthcare costs than children not on the autism spectrum. It is important to note that the datasets used in this study do not take into account funding for school-based services and supports that students with autism may receive. Furthermore, family members may reduce their workforce participation to care for their child. Additionally, some children with autism may be in long-term care settings or in foster care and likely incur higher healthcare costs, but these cases are not fully captured by the datasets used in this study. This combination of significant cost considerations highlights the need for improved policies surrounding funding for autism services, supports, and interventions to improve the health and wellbeing of individuals with autism and their families.