By Alexis Taylor
Special to the AFRO
Advocates across the country are continuing to express concern for the disabled population that has been hit hard by the coronavirus pandemic.
Access to personal protective equipment (PPE) and testing has significantly impacted efforts to control the pandemic, but a host of other issues have compounded for those navigating the pandemic with a disability.
From impeded communication due to masks to lack of basic support for their conditions, a number of issues have exacerbated the effects of COVID-19 for disabled Americans.
“There have been problems with people not being able to have a trusted caregiver assist with communication or advocate for them in the hospital,” said Dr. Lisa Iezzoni, associate director of the Health Policy Research Center at the Massachusetts General Hospital in a conference call for members of the press. “Family and friends are locked out so there is no advocacy or eyes in the facility to see what’s going on.”
“There have been communication problems relating to persons who are deaf or hard of hearing, such as the failure of staff to wear clear masks so that patients who read lips can see lip movements.”
Most egregious, Iezzoni said, some states’ initial crisis care guidelines, “which determine whether patients get scarce resources such as ICU beds or ventilators, explicitly exclude persons with certain types of disability such as intellectual disability and broadly stated functional impairments.”
Alabama, for example, initially “allowed for denying ventilator services to individuals based on the presence of intellectual disabilities, including ‘profound mental retardation’ and ‘moderate to severe dementia,’ according to the U.S. Department of Health and Human Services. That language was added to the Emergency Operations Plan for Alabama in 2010 and has since been eliminated.
Aside from ventilator access, even the most basic of supports are harder to come by as the healthcare system strains to keep afloat.
Iezzoni, who has used a wheelchair since 1988 due to multiple sclerosis, said physically disabled COVID-19 patients that are confined to beds have reported bed sores and pressure wounds simply from not being turned over periodically by caregivers.
In Maryland, 13,800 of the 86,285 cases confirmed by the Maryland Department of Health have come out of nursing homes, group homes and assisted living facilities.
“In Massachusetts 60 percent of the more than 7,600 deaths have been among nursing home residents,” said Iezzoni. “Staff are untrained, they lack infection control procedures, they lack PPE, and testing for both residents and for staff.”
Advocates say the unnecessary deaths are occurring among both healthcare workers in facilities and family members serving disabled relatives at home.
“The common denominator is the lack of appropriate personal protective equipment,” said Zenei Cortez, a co-president of National Nurses United. “If we had the proper protective equipment at the very beginning of this pandemic all of these events would have been prevented.”
According to Iezzoni, “family caregivers who provide roughly 85 percent of support to persons with disabilities living in their homes” are “overwhelmed.”
These families often turn to less than standard care options when agencies prevent their nurses from home care as a side job.
“The only option for consumers is to go out and hire their own personal care assistants- which is a time consuming and complicated process even without COVID,” said Iezzoni.
These assistants often aren’t affiliated with a healthcare organization that could supply PPE or proper training, resulting in more COVID-19 cases.
While the Centers for Disease Control and Prevention note (CDC) that “disability alone may not be related to higher risk for getting COVID-19…some people with disabilities might be at a higher risk of infection or severe illness because of their underlying medical conditions.”
Several changes must take place to turn around coronavirus statistics among the disabled population including increased access to PPE, coronavirus testing, and lower patient to staff ratios in nursing homes and hospitals.
Iezzoni said compliance to infection control measures in congregate living facilities, updated crisis care guidelines that include persons with disabilities, and systems to track home-based caregivers will help in the fight against COVID-19.
“There is growing recognition of a whole set of people called the ‘long haulers’ or ‘long termers-’ people who may have never tested positive for coronavirus but nevertheless are having months of symptoms- fatigue, memory loss, intermittent fevers, and other debilitating symptoms,” said Iezzoni.
“Having a disability is the one minority group anyone can join in a flash,” she said, “Long term disability may become an enormous personal and societal cost of the pandemic.”