Telehealth Works. Why Isn't Everyone Receiving It?
New research suggests children with developmental delays have lost services.
Posted Sep 28, 2020
Previous research suggests that telehealth is a viable alternative to in-person therapy and diagnostic services for many individuals with autism and other developmental disabilities. Telehealth has become increasingly crucial in the past six months due to COVID-19 restrictions across the United States and abroad. However, telehealth is only useful if families are successfully receiving it. A new September, 2020 article published in the Journal of Intellectual Disability Research suggests that not enough families are receiving telehealth, which has resulted in loss of services since the beginning of the COVID-19 health crisis.
Caregivers of children with both genetic diagnoses and neurodevelopmental delays (i.e. global developmental delay, intellectual disability, ASD, or epilepsy) completed an online survey about their experiences with services during the global health crisis. Researchers focused on caregivers of children with both genetic and neurodevelopmental delays because these children are likely to need a high level of care and are therefore at high risk for negative outcomes if services are discontinued. The survey asked about demographics, changes in access to services, and what resources would help families navigate these changes.
Some 818 caregivers responded to the survey (669 in the USA and 149 outside the US). Percentage of parents reporting that their child had a diagnosis of ASD was 42 percent in the US and 45 percent for participants abroad. Within the US sample, 90 percent of parents reported their child had a developmental disability, 80 percent reported that their child had intellectual disability, and 57 percent reported their child had epilepsy. Numbers were similar for the non-US sample (85 percent developmental delay, 76 percent intellectual disability, 53 percent epilepsy).
A staggering 74 percent of caregivers in the US and 78 percent outside of the US reported that their child lost access to at least one educational or therapeutic service. And 30 percent within the US and 50 percent outside of the US reported having lost all access to therapy and/or educational services. Only 56 percent in the US and 32 percent outside the US reported that their child was able to continue receiving services via telehealth. Of families who reported receiving telehealth services, 86 percent in the US, and 91 percent outside the US reported that these services were helpful. Perhaps unsurprisingly, families who were receiving more telehealth services felt these services were more helpful than those receiving less.
When caregivers were asked what could help improve school programs and interventions, the top five suggestions were the following:
- More telehealth based learning, 1:1 sessions, and more frequent sessions (suggested by 143 caregivers)
- Continuation of previously available services (suggested by 110 caregivers)
- Access to in-person services (suggested by 103 caregivers)
- Better quality programming and planning (suggested by 52 caregivers)
- social interactions with peers, teachers, and friends (suggested by 39 caregivers)
Conclusions and Take Away Messages:
Unfortunately, results from this large-scale survey suggest that a majority of participants lost services during COVID-19, which likely negatively impacts both children and caregivers. Though it was expected that many families lost in-person services due to COVID-19 related closures, it is troubling that only 56 percent and 34 percent in the US and abroad, respectively, have received continuing services via telehealth.
As previous studies have highlighted the feasibility and success of providing services via telehealth, this lack of service continuation appears to be a problem of availability and access. This study should serve as a wake-up call to providers and insurance companies across the globe to increase the availability of telehealth services to families of children with complex neurodevelopmental conditions. One of the strengths of telehealth is that it can be provided across physical locations, which mitigates barriers related to distance, travel, lack of access to transportation, etc. As providers, we must advocate for families to receive services during this uncertain time.
Jeste, S., Hyde, C., Distefano, C., Halladay, A., Ray, S., Porath, M., Wilson, R. B., and Thurm, A. (2020) Changes in access to educational and healthcare services for individuals with intellectual and developmental disabilities during COVID‐19 restrictions. Journal of Intellectual Disability Research, https://doi.org/10.1111/jir.12776.
Ferguson, J., Craig, E. A., & Dounavi, K. (2019). Telehealth as a model for providing behaviour analytic interventions to individuals with autism spectrum disorder: A systematic review. Journal of autism and developmental disorders, 49(2), 582-616.
Alfuraydan, M., Croxall, J., Hurt, L., Kerr, M., & Brophy, S. (2020). Use of telehealth for facilitating the diagnostic assessment of Autism Spectrum Disorder (ASD): A scoping review. PloS one, 15(7), e0236415.