Impact of COVID-19 on Therapies, Services and Medical Supports

Wendy Chung, M.D., Ph.D., Principal Investigator of Simons Searchlight
Date Published: April 17, 2020

I want to thank the families who took the time to share how COVID-19 has affected their daily lives. It’s clear that there have been disruptions; however, we were happy to see that many of you shared strategies that have been working for you and your family.

Our findings are summarized below. The document may be downloaded as a picture (PNG) or as a printer-friendly document (PDF). We will continue to follow our community through surveys as this situation evolves.

Let’s talk more about this survey.

489 Simons Searchlight parents or caregivers responded to our Impact of COVID-19 on Therapies, Services, and Medical Supports Survey that launched on April 1^st, 2020.

Our goal is to learn how the Simons Searchlight community is being affected by COVID-19, in real time. We want to know about the disruption of services and how you are faring with mental, emotional, and physical health.

The vast majority of parent and guardian respondents were female, and the children were roughly half male and half female. Over 59 different genetic groups participated in this survey. A total of 26 countries are represented, with most of the responses from North America (U.S. and Canada) and the UK.

What we learned

We learned that issues faced were similar across all genetic groups. Most families were severely affected by the COVID-19 disruptions, and parents of children under the age of 5 reported more severe disruptions in their child’s services compared to school-age children or dependent adults. Telemedicine was used more often by families with young children. Caregivers reported new behavioral challenges, and a larger impact in children who have developmental delay. Disruptions in hospital services were highest for children or dependents with a history of seizures.

Challenges

Many caregivers reported that they were struggling with the changes. Most children or dependents no longer have access to services they received at school, and for many, online schooling was difficult. Participants reported issues with juggling work or loss of employment. The lack of training in specialized services has left caregivers concerned that their child or dependent may regress during this time. Many parents reported that their children or dependents experienced anxiety, meltdowns, or aggressive behaviors as a result of disruptions in their routine.

What’s working

Caregivers took the time to tell us what is working for them. Families reported appreciating the extra family time. One family stated, “Now we enjoy every moment together.” Many are focusing on hobbies, limiting social media and news, and exploring mindfulness activities like breathing exercises, yoga, meditation, and prayer. Some families have embraced the chaos and are focusing on what can be controlled one day at a time.