The coronavirus pandemic has created unique concerns for caregivers and people with intellectual and developmental disabilities.

Individuals with disabilities likely have the same risk factors as the general population — those who are older or have compromised immune systems are most vulnerable to the virus.

But anyone with intellectual disability, moderate to severe developmental delay, muscular dystrophy or brain disorders may also be more susceptible to severe illness from COVID-19, according to the Centers for Disease Control and Prevention.

As of Monday, there have been 3,487 cases of coronavirus, or COVID-19, and 68 deaths across the U.S., according to the CDC.

Beyond canceling large events, the federal agency recommends social distancing practices in residential facilities and adult day programs to prevent the spread of the virus. These practices include staggering meals and activity schedules, limits on visitors and daily body temperature screening for residents and staff. In situations where a positive coronavirus case is identified, quarantine or closure may be recommended.

Families should check with their care providers to ensure the guidelines are being followed, experts said.

“People with intellectual and developmental disabilities are a diverse group of people, and so there is no one-size-fits-all approach to keeping them healthy,” said Shannon McCracken, vice president for government relations for the American Network of Community Options and Resources, or ANCOR, a trade group representing disability services providers.

The basic recommendations for everyone are the same — wash hands frequently with soap and water for at least 20 seconds, avoid contact with people who are sick and disinfect high-contact surfaces like doorknobs and light switches.

Most importantly, do not go out in public if you’re sick.

But those guidelines, while universal, become more complicated for people with disabilities and their caregivers.

“Staying home when you’re feeling sick may not be an option if someone with a disability relies on you for the activities of daily life,” McCracken said. “Therefore, the most important thing we can all do is remember that people with intellectual and developmental disabilities and the professionals who support them need to be part of the conversation, and that protocols should be tailored to the unique needs of the person and the situation facing their community.”

It’s important to communicate with family members about coronavirus using facts but not unnecessary fear, according to a tip sheet from Autism Speaks.

Watch for signs of distress that can be caused by changes in routine, the organization advises.

If the family member lives in a group home or independently, make sure handwashing and other hygiene precautions are being taken.

“Most of the providers we’ve heard from are being extra diligent in following the guidelines,” McCracken said. “We’ve heard that providers are ensuring that visitors to group homes and day programs wash their hands before walking through the front door.”

As more schools and workplaces close down, caregivers might not be able to leave their own homes, worsening the existing staff shortages across the country. People with disabilities who cannot live independently will not be able to follow self-quarantine guidelines, advocates said.

Representatives from ANCOR are lobbying for emergency measures including flexibility on staffing ratios with government officials to address these unprecedented concerns, McCracken said.

“We can expect that many direct support professionals will call out sick if they have children at home who cannot go to school,” McCracken said. “Although school closures might be the best option for slowing the spread of the virus, these moves may also have unintended consequences for people with intellectual and developmental disabilities.”

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