Survey 6: Updates: Access to Education, Therapies, and Services During COVID-19

We hope everyone has been staying safe over these past several months as many families cautiously find and embrace a sense of normalcy. We want to thank all the families who shared their COVID experiences with us in December 2021 (survey 6). With the COVID-19 vaccine available to more people and with many children returning to in-person school environments, we wanted to find out how transitions back to more “traditional” settings have been for you and your family. This information would not be available to the Simons Searchlight community without you!

Our findings are summarized below. The document may be downloaded as a picture (PNG) or as a printer-friendly document (PDF).

What did we find in December 2021 (survey 6)?

We found that most dependents were attending school in person for the 2021-2022 school year. Caregivers’ satisfaction with their dependents’ school experience improved from the previous year (November 2020) . In December 2021, we also found that 89 percent of caregivers said their child had an individualized education plan (IEP) and that 45 percent of caregivers said that they experienced delays in developing or updating their child’s IEP due to COVID-19.

In regards to the COVID-19 vaccine, 88 percent of caregivers had someone in their household that received the COVID-19 vaccine and 45 percent of caregivers said that their dependents with genetic conditions received the COVID-19 vaccine (note: this includes children in Simons Searchlight that are not yet in an eligible age group for the vaccine). There was also an increase in the number of positive COVID-19 cases reported by families from November 2020 to December 2021. As of December 2021, 21 out of 182 participants with a genetic condition tested positive for COVID-19. Only 2 out of these 21 people who had COVID-19 were hospitalized due to the disease.

Notably, caregivers reported they are much more concerned about the health and well-being of their dependents with the genetic condition versus their own health.

Archived COVID-19 survey summaries:

• Survey 1 summary “Impact of COVID-19 on Therapies, Services and Medical Supports” can be found here.
• Survey 2 summary “Impact of COVID-19 on Medical Supports and Caregiver Mental Health” can be found here.
• Survey 3 summary “Development and Mental Health during COVID-19” can be found here.
• Survey 4 summary “Access to Education, Therapies and Services during COVID-19” can be found here.
• Survey 5 summary “Updates, One Year After the Start of the COVID-19 Pandemic” can be found here.