What happens to individuals with developmental disabilities (IDD) when their lifestyle and support system suddenly changed due to the COVID-19 pandemic? What happens when their daily school routine was converted to remote learning sessions via google meet and zoom room? What happens when the pandemic places tremendous demands on limited resources for these individuals, their families, and for the provider system?
Most of the results, sadly, aren’t good.
The COVID- 19 pandemic has created unprecedented and unique challenges for IDD, who were disproportionately isolated prior to the pandemic. According to a study published on Disability and Health Journal, IDD are significantly more likely than others to die if they contract Coronavirus.
COVID-19-related fatality rates among people with IDD nationally who tested positive for COVID-19 are 100 percent to 200 percent greater than the mortality rates among the general population who tested positive for COVID-19. Rachel London, the executive director of Maryland Developmental Disabilities Council told the Baltimore Times that the council, which is an independent public policy organization, continues its efforts to advance the inclusion and to promote support and full integration of IDD into all aspects of community life.
“Direct Support Professionals (DSP) play a critical role in the daily lives of the over 17,000 people with developmental disabilities who receive services and supports funded and licensed by the Developmental Disabilities Administration (DDA).
Like teachers, DSPs create ways to teach people new skills. Like nurses, they provide treatments, document care. Like social workers, they get people connected to their communities. Like counselors, they listen, reflect, and offer suggestions. DSPs provide whatever support it takes so people can thrive in their communities,” said London.
Kalani Brown, a mother of nine-year-old son with Down syndrome says that her son has not received any in-person support or in-person therapy since March 13, 2020. Although, he has returned to school as of March 15, 2021, his speech and occupational therapy are still conducted virtually. His social emotional goals on his Individualized Education Plan IEP were not met during virtual learning.
“My son’s IEP notes that he is to have one-on-one adult support throughout the day, including scaffolding of material based on the general education curriculum. However, this was not provided,” said Brown. “My son learns best by having someone model and prompt him. This has not occurred during virtual learning. I ended up providing his one-on-one support during his virtual class by creating materials and providing modifications to help him access the curriculum,” added Brown.
Angie Auldridge, a mother of three, her seven-year-old son has autism, along with a rare genetic disease (SCN2A), and intellectual disability, her son has GI dysfunction, with significant challenges with focus and attention. Auldridge’s son was transitioned to learning via Zoom which was incredibly difficult for him since he can’t attend well in person or pay attention to a screen that occasionally freezes— frustrating him further.
“In order for our son to attend online learning, my husband and I would take turns finding creative ways to keep him seated. We tried adaptive seating including a chair that allowed him to wiggle. We tried sitting behind and beside him to block him from leaving. However, keeping him seated was only half the battle,” said Auldridge.
“The remainder of the struggle was to try to get him to engage with the lesson, and not become distracted by the background noise from our own home, as well as his classmates’ homes when they weren’t on mute.”
A large number of people with IDD depends on caregivers and loved ones to help them bridge gaps in intellectual and communication abilities but many of them lost access to trained caregivers and community service providers due to the pandemic.
“For many months, my son’s therapeutic services through the school system, such as speech therapy, occupational therapy, vision support, and adaptive physical education were moved to consult. So, if we needed something, we could reach out to get support, but otherwise, he was not receiving regular services,” said Auldridge.
Acknowledging the struggle of IDD and their families, London said that the council advocated throughout the pandemic to ensure IDD and their families received the services and supports needed and that providers had the funding and statewide support to continue.
“Recognizing the need to remain comfortable and connected, the Council funded $85,000 [to] alleviate the anxiety caused by social distancing and promote continued engagement with peers by providing funds to fill gaps in services that people are experiencing due to the required social distancing. The success of that project led to another $135,000 to fund technology,” said London.
While the struggle continues, many families strongly believe that IDD need more support and most importantly, they need more opportunities to be heard.
“People with IDD are extremely competent but sadly, are not treated as such. Decisions are made without their input. I think that for any improvement to occur, people with IDD, their families and caregivers must have a seat at the table,” said Brown