For people with disabilities, COVID-19 presents an extra burden

“If we ever get to a point where – the medical professionals call it surge capacity – where the demand for services outpaces what’s available, like ICU beds or ventilators,  people with disabilities, people of color and seniors based on these guidelines may get turned away,” said Emily Cooper, legal director at Disability Rights Oregon.

“And we’re worried about that because these are the same exact populations that are most at risk of getting this virus and dying.”

Advocates are working with state leaders on Oregon’s crisis care guidelines in hopes that triage and rationing of medical resources does not prevent people from getting the care they need, Cooper said.

But she’s already heard of at least one adult with a developmental disability struggling to access needed medical treatment for reasons her office suspects were discriminatory.

“I don’t have permission to share client identifying information,” Cooper said. “It’s not just a hypothetical concern, it’s a real concern that we’re already seeing here in Oregon.”

Beyond treatment for medical conditions, people with disabilities often rely on support services that help them live their lives, and those services have been affected – severely at times – by COVID-19 restrictions.

“I am legally blind, and this really has made problems for me,” a caller recently told “Think Out Loud.”

“My assistant who does the seeing for me, she cannot get close to me, which means she really is not all that much help,” the caller said.

“My son who is 13 has a disability and we are at home. And no, I do not have access to everything that I need,” another caller, Janet Funk, reported. “We don’t have access to our respite care, and I am doing all of the roles of special education teachers, speech pathologists, occupational therapist, physical therapist. I am doing it all on my own with the support of my husband, who is working full-time from home. It is very challenging.”

A number of adults with cognitive disabilities struggle to understand why they cannot follow their routines, and many have lost their jobs amid the mass layoffs of the past six weeks, said Lilia Teninty, director of the Oregon Office of Developmental Disabilities.

“We are tracking our data closely, and definitely there has been a reduction in the number of hours of support that are being provided,” Teninty said. “It could be a worker who is concerned about their own health and safety, who – either with or without a protective mask – chooses to socially distance from a client, or it can be an individual who lives with a family, and the family says, ‘You know what, during this time we don’t want workers coming into the home.’”

The state Office of Developmental Disabilities is now allowing workers to connect to clients by video or phone calls – but remote support is not always enough.

Many people with disabilities and service providers say they still do not have access to masks, gloves or other tools to keep themselves safe, Cooper said.

These challenges extend to so-called congregate care facilities, such as group homes and nursing homes, which have barred most visitors as part of Gov. Kate Brown’s stay home order. 

“As for hospital visitation, the Oregon Health Authority did recently release updated guidance that does allow support, and allow for people with disabilities to have a caregiver come with them into the hospital if they need assistance accessing medical care, or making decisions about what their medical care might need to look like,” Teninty said.

But those guidelines are not consistently applied. In some cases, people with communication challenges have been unable to access interpreters at hospitals, or have been denied visits from family members who can help them communicate their needs, Cooper said.

“We urgently have asked the state for clear, uniform and consistent guidance,” she said. “Your right to a visitation or your right to accommodation shouldn’t depend on what state office is serving you and what disability you have.”

The restrictions put in place to slow the spread of the coronavirus have made it more difficult for many people with disabilities to access the services that help them on a daily basis.

The challenges and impacts are different for different groups – from the deaf and blind communities, to adults with intellectual or developmental disabilities, to children in special education classes. 

Many people are especially concerned that people with disabilities could be denied life-saving medical treatment if a surge in COVID-19 diagnoses leads the state to ration care.

“If we ever get to a point where – the medical professionals call it surge capacity – where the demand for services outpaces what’s available, like ICU beds or ventilators,  people with disabilities, people of color and seniors based on these guidelines may get turned away,” said Emily Cooper, legal director at Disability Rights Oregon.

“And we’re worried about that because these are the same exact populations that are most at risk of getting this virus and dying.”

Advocates are working with state leaders on Oregon’s crisis care guidelines in hopes that triage and rationing of medical resources does not prevent people from getting the care they need, Cooper said.

But she’s already heard of at least one adult with a developmental disability struggling to access needed medical treatment for reasons her office suspects were discriminatory.

“I don’t have permission to share client identifying information,” Cooper said. “It’s not just a hypothetical concern, it’s a real concern that we’re already seeing here in Oregon.”

Beyond treatment for medical conditions, people with disabilities often rely on support services that help them live their lives, and those services have been affected – severely at times – by COVID-19 restrictions.

“I am legally blind, and this really has made problems for me,” a caller recently told “Think Out Loud.”

“My assistant who does the seeing for me, she cannot get close to me, which means she really is not all that much help,” the caller said.

“My son who is 13 has a disability and we are at home. And no, I do not have access to everything that I need,” another caller, Janet Funk, reported. “We don’t have access to our respite care, and I am doing all of the roles of special education teachers, speech pathologists, occupational therapist, physical therapist. I am doing it all on my own with the support of my husband, who is working full-time from home. It is very challenging.”

A number of adults with cognitive disabilities struggle to understand why they cannot follow their routines, and many have lost their jobs amid the mass layoffs of the past six weeks, said Lilia Teninty, director of the Oregon Office of Developmental Disabilities.

“We are tracking our data closely, and definitely there has been a reduction in the number of hours of support that are being provided,” Teninty said. “It could be a worker who is concerned about their own health and safety, who – either with or without a protective mask – chooses to socially distance from a client, or it can be an individual who lives with a family, and the family says, ‘You know what, during this time we don’t want workers coming into the home.’”

The state Office of Developmental Disabilities is now allowing workers to connect to clients by video or phone calls – but remote support is not always enough.

Many people with disabilities and service providers say they still do not have access to masks, gloves or other tools to keep themselves safe, Cooper said.

These challenges extend to so-called congregate care facilities, such as group homes and nursing homes, which have barred most visitors as part of Gov. Kate Brown’s stay home order. 

“As for hospital visitation, the Oregon Health Authority did recently release updated guidance that does allow support, and allow for people with disabilities to have a caregiver come with them into the hospital if they need assistance accessing medical care, or making decisions about what their medical care might need to look like,” Teninty said.

But those guidelines are not consistently applied. In some cases, people with communication challenges have been unable to access interpreters at hospitals, or have been denied visits from family members who can help them communicate their needs, Cooper said.

“We urgently have asked the state for clear, uniform and consistent guidance,” she said. “Your right to a visitation or your right to accommodation shouldn’t depend on what state office is serving you and what disability you have.”