Changes in access to educational and healthcare services for individuals with intellectual and developmental disabilities during COVID-19 restrictions.
Push for live video sessions—families lost most services during COVID-19, but telehealth coaching cuts problem behavior 80% when you actually use it.
01Research in Context
What this study did
The team sent a survey to families who have a member with intellectual or developmental disabilities.
They asked which therapy, school, and medical services stopped when COVID-19 lockdowns began.
Families also shared whether anyone gave them telehealth instead.
What they found
Three out of four families lost at least one therapy or class.
More than one in three lost any healthcare at all.
When staff offered live video visits, families said they helped, but most never got that option.
How this fits with other research
Spackman et al. (2025) later showed 17 families ran full functional analyses on Zoom and cut problem behavior 80%.
Their strong results prove the 2020 plea for 1:1 videoconference sessions was spot-on.
Tsami et al. (2019) had already taught parents to do IISCA and treatment online with the same success, so the know-how was there before the pandemic.
Whitehouse et al. (2014) found minority adults with IDD get less care in normal times; the new survey shows COVID-19 made that gap worse.
Why it matters
You now have proof that telehealth works for IDD and that families still go without it.
Ask your agency for a simple Zoom or Teams link and schedule caregiver coaching just like Emily’s team.
One live screen-share can replace a lost clinic slot and keep progress moving.
Get CEUs on This Topic — Free
The ABA Clubhouse has 60+ on-demand CEUs including ethics, supervision, and clinical topics like this one. Plus a new live CEU every Wednesday.
Email your supervisor and request a HIPAA-safe video link so you can coach parents live this week.
02At a glance
03Original abstract
BACKGROUND: COVID-19 restrictions have significantly limited access to in-person educational and healthcare services for all, including individuals with intellectual and developmental disabilities (IDDs). The objectives of this online survey that included both national and international families were to capture changes in access to healthcare and educational services for individuals with IDDs that occurred shortly after restrictions were initiated and to survey families on resources that could improve services for these individuals. METHODS: This was an online survey for caregivers of individuals with (1) a genetic diagnosis and (2) a neurodevelopmental diagnosis, including developmental delay, intellectual disability, autism spectrum disorder or epilepsy. The survey assessed (1) demographics, (2) changes in access to educational and healthcare services and (3) available and preferred resources to help families navigate the changes in service allocation. RESULTS: Of the 818 responses (669 within the USA and 149 outside of the USA), most families reported a loss of at least some educational or healthcare services. Seventy-four per cent of parents reported that their child lost access to at least one therapy or education service, and 36% of respondents lost access to a healthcare provider. Only 56% reported that their child received at least some continued services through tele-education. Those that needed to access healthcare providers did so primarily through telemedicine. Telehealth (both tele-education and telemedicine) was reported to be helpful when available, and caregivers most often endorsed a need for an augmentation of these remote delivery services, such as 1:1 videoconference sessions, as well as increased access to 1:1 aides in the home. CONCLUSIONS: COVID-19 restrictions have greatly affected access to services for individuals with syndromic IDDs. Telehealth may provide opportunities for delivery of care and education in a sustainable way, not only as restrictions endure but also after they have been lifted.
Journal of intellectual disability research : JIDR, 2020 · doi:10.1111/jir.12776