During the early days of the lockdown, staff from the Sunrise Adult Training Centre worked hard to check in personally with its clients – representing some of Cayman’s most vulnerable community members – to ensure they had food and were adjusting as best as possible to life under COVID-19.
That meant delivering groceries, connecting families with Meals on Wheels, or helping with Needs Assessment Unit applications.
Now, with more restrictive public health measures in place, daily check-ins by staff rely on phone calls, social media and video chats.
Whether updates happen in person or online, however, the idea remains the same: to create some sense of stability in the lives of the island’s special needs population.
“For some of our clients,” said Sunrise director Kimberly Voaden, “their routine of coming to the centre on a daily basis and making sure that they get something to eat, it’s important for them and it’s helpful for their families.”
Zoom, WhatsApp and personalised videos by staff have helped keep the Sunrise community connected during a time that can be especially difficult to process for individuals with neurological or intellectual differences.
“The video chats are helpful. It’s a chance to help families problem solve if there’s anything that is coming up as a need,” Voaden said.
“It’s also just an emotional support for our guys, as well, and for staff, because we miss all of them.”
Maintaining open lines of communication plays an important part in achieving larger goals to promote wellness and create consistency.
Dr. Catherine Day, a consultant clinical psychologist who specialises in neuro-developmental disorders, explained that creating routine and a level of predictability is especially important to the population served by Sunrise.
“Some people with [an autism spectrum condition] can become extremely distressed when their routines are interrupted or their normal kind of rituals can’t take place,” she said.
“There may be some people who are extremely distressed by these changes and may have limited capacity to understand why those changes are necessary.”
The additional stress and anxiety mean that family members need to take an active role in guiding the flow of information and providing emotional regulation, Day explained during a recent workshop for caregivers hosted on the Alex Panton Foundation’s Facebook page.
Individuals with a younger developmental age rely on caregivers for much of their emotional regulation and turn to them for clues on how to react.
“Some people, the less language skills they have, the more emotionally and socially attuned they are in order to understand the world around them,” Day said during the workshop. “If you as a parent or caregiver are too anxious, then they’re going to get anxious too. And if they aren’t calm, then they can’t process or understand what’s happening.”
Caregivers must also be cognisant of the type of information coming into the home. An excess of stressful news reports or social media posts puts the brain on alert and can keep individuals trapped in a threat-response mode.
“Constantly watching the news and social media about COVID-19 is not helpful. What will happen is that our brain will get stuck in a loop of threat response and focus on looking for further threats all the time,” Day said at the workshop.
“People with disabilities, many of them may already be stuck in threat response a lot of the time, because of the adverse experiences they have in a world that does not accept or tolerate their differences.”
To help make public health information more accessible, Day has worked alongside Sunrise to adapt important messages into diverse formats. That has meant the creation of ‘easy-read’ materials that explain coronavirus in simple and visual terms. The addition of closed captioning and sign language interpreter Carolyn Powell to daily news briefings, as advocated by the National Council for Persons with Disabilities, has also made updates more accessible to the hearing impaired.
“For someone who has lower communication skills, we need to consider how much they understand about what’s going on and how things are communicated and explained to them,” Day said.
While social media platforms can help disseminate information and foster community, Day added that they are not accessible by all.
Creating and distributing paper copies of ‘easy-read’ material on COVID-19 may be the best way to ensure Cayman’s vulnerable populations are able to access public health messages, she said.
“One of the vulnerabilities of adults with intellectual disabilities is that they may not have internet access. They may not have social media. Certainly, some of my clients don’t have phones,” Day said.
“So, the only way they’re going to access that information is if somebody puts it on their doorstep.”
Easily understandable information must also be made available at healthcare facilities, Day added. If an adult with poor communication skills presents to medical services with symptoms, staff must be prepared to adapt.
“People with intellectual disabilities may communicate pain, for example, through a change in behaviour rather than through verbally communicating to somebody that they’re in pain,” she said.
“The responsibility really lies with healthcare teams to be able to provide information in an accessible format, so that increases the chances or capacity for that person to understand what is being asked of them or what was being offered to them.”
Ensuring clear communication also touches on the larger health vulnerabilities of the special needs population, explained Magda Embury, chairperson of National Council for Persons with Disabilities.
“Communication is directly important to the issue of health because persons with disabilities are susceptible to an increased risk of contracting the virus both due to having underlying health issues and due to not understanding the new rules and means of staying safe,” Embury said.
She applauded the efforts by Day, the Sunrise Centre, Lighthouse School and other community organisations to step up to the task and provide diversified forms of communication.
The council has been an advocate for tools such as ‘easy-read’ materials and the sign language interpreter at daily press briefings.
To further assist in dissemination of public health information, Embury said the council also hopes to establish a national register of persons with disabilities, which would require passage of regulations under the Disabilities (Solomon Webster) Law.
“The current public health crisis is a difficult time for all,” Embury said, “but as a council we recognise that it is important to meet the needs of the most vulnerable of our population, many of whom cannot advocate for themselves.”