By Sarah Ovaska
Velvet Gammons rarely left the side of her disabled son Scottie, who had complex medical needs requiring around-the-clock care at their Mount Airy home.
But when Scottie, 32, went into Wake Forest Baptist Medical Center for treatment, staff at the Winston-Salem hospital told her that pandemic-related visitor restrictions meant she couldn’t be with Scottie in the ICU, despite his well-documented cognitive issues.
Scottie died on April 7, and the mother who pleaded to be able to be by his side was not there for his final breaths.
Gammons and several disability rights groups in the state argue that hospitals’ visitor restrictions in situations such as the Gammons’ violates basic civil rights provisions that should allow Scottie and others with intellectual or developmental disabilities access to their caregivers, even during the COVID-19 pandemic.
“How, when you are mentally [the same as] a child, can you be by yourself when you cannot speak for yourself, you can’t understand?” Gammons said she asked Wake Forest Baptist staff about Scottie.
Her son had myotonic dystrophy, a genetic condition that left him unable to speak and on ventilators and feeding tubes for much of his life.
Spokespeople for Wake Forest Baptist indicated that they could not comment on specific cases but the hospital does “make exceptions for a number of different circumstances” and staff is committed to providing compassionate care.
Advocacy groups sound alarms
The COVID-19 pandemic has upended much of how the state’s health care systems operate, initially delaying everything but the most essential surgeries as health care providers responded to the spread of the dangerous and highly contagious pathogen. Hospitals in North Carolina and elsewhere have enacted visitor restrictions to try to prevent the spread of the disease.
That means more patients are alone, although access has been given to those deemed essential such as parents or guardians for pediatric patients, as well as allowing the birth partner of a woman in labor to be by her side.
But pushed aside in some instances have been the caregivers of those with disabilities, both adults and children, said John Nash, executive director of the Arc of North Carolina, an advocacy group for those with intellectual disabilities. He has heard of four instances of caregivers in different parts of the state being denied access to their disabled loved ones in North Carolina hospitals and believes there are many more instances that he and other advocates haven’t heard about.
He believes this violates long-held principles outlined in the landmark 1990 Americans with Disabilities Act and other federal laws including the CARES Act, the recently passed COVID-19 stimulus bill.
“This is not just a request,” Nash said. “This is a part of a person’s civil rights.”
A parent or caregiver can often provide the only means a person with disabilities has to communicate or have their needs understood by hospital staff. Cutting off that connection jeopardizes health outcomes, he said.
“If we see someone in an ER or a hospital without those abilities to communicate, the chance of things going wrong goes way up,” Nash said.
The Arc and other advocacy groups such as the North Carolina Down Syndrome Alliance, N.C. Developmental Disabilities Consortium and Autism Society of North Carolina issued a letter for families to use if they are facing resistance from hospital administrators. The groups have also reached out to the N.C. Department of Health and Human Services in recent weeks as well to relay their concerns, but the state agency has yet to send out specific guidance to hospitals outlining what is and isn’t allowable.
That guidance is expected to come out today, however, according to N.C.DHHS.
Corye Dunn, the public policy director for Disability Rights North Carolina, said they too have heard from families encountering issues with hospital visitor restrictions. Most are able to eventually get hospital officials to relent, but even having to push to allow that access is contrary to what should happen, she said.
For its part, N.C. DHHS officials agree that those with disabilities have the right to have caregivers accompany them in the hospital, even in the midst of the COVID-19 pandemic, pointing to CDC and U.S. Health and Human Services’ advice on the topic.
“For individuals with a cognitive impairment, their caregiver is an extension of the individual with the impairment, and should be treated as such,” Kelly Haight Connor, a N.C. DHHS spokeswoman, said in a statement. “Unless it negatively impacts a facility’s ability to ensure the safety of other patients or visitors, anyone with a cognitive impairment should be allowed to have their caregiver with them either in the ambulance or in the hospital.”
Hospitals are waiting to see that guidance from NC DHHS directing them to do this, according to Cynthia Charles, a spokeswoman for the N.C. Health Association, the trade group that represents the state’s hospital systems.
Meanwhile, hospitals are making case case-by-case decisions on how to handle caregiver access for those with disabilities.
Families deal with access issues
Gammons was given some access to Scottie over the course of his five-day ICU stay at Wake Forest Baptist after a Greensboro television station aired a story about her plight early in his stay. She was allotted an hour visit each day, a situation that Gammons thinks introduced more risk of introducing COVID-19 into a hospital setting than if she stayed there the entire time, as she’d hoped.
Though glad she had those hour-long daily visits, she wrestles with not being able to comfort Scottie all those hours when he was without her.
“He would just look at me, and I know he was thinking, ‘why is Momma leaving me?’” Velvet Gammons said about those visits.
Gammons, who is a registered nurse with 30 years of experience, also wonders if Scottie would have survived his hospital stay had she been there. She contends hospital staff misinterpreted scar tissue on Scottie’s lungs from prior issues as a current bout with pneumonia and failed to properly treat the gallbladder issues that prompted the five-day hospital stay.
The parents of 26-year-old Landon Walker of Wilkes County faced similar issues when their son needed to be airlifted to Wake Forest Baptist late last month after low blood sodium levels brought on seizures.
Walker suffered traumatic brain injuries from an ATV accident at 17, leaving him completely dependent on his parents, Tracie and Randy Walker, with medical complications that required around-the-clock care. Landon is unable to talk or walk and uses a ventilator at night to breathe while an overnight nurse sits with him to ensure he’s safe while his parents sleep.
“We are his voice in every sense of the word, in every aspect of his life,” Tracie Walker said.
Wake Forest Baptist staff would not let either of his parents join him during this four-day stay at the hospital, citing the visitor restrictions enacted to keep the spread of COVID-19 low in the hospital, Tracie Walker said. He’s now back at the family’s home recuperating.
Nurses at Wake Forest Baptist accommodated the family as best they could, Walker said, setting up Zoom conference calls several times a day. It was during one of those calls she noticed there was no equipment in the hospital room for Landon’s daily chest compression therapies, which help prevent pneumonia or other complications he faces from being prone and on ventilators for several hours a day.
“We’re going to have another problem if we don’t get that equipment in there,” Walker said she relayed to Wake Forest Baptist staff after noticing the issue on Zoom.
She’s grateful that they were able to get Landon discharged and back home, knowing that a normal hospital stay can be challenging for Landon and other disabled individuals even before COVID-19 added more layers of complications.
Nonetheless, Walker worries about what they might face if he or others with similar needs have to be hospitalized again and aren’t able to have caregivers with them.
“This is a much more stressful time because of COVID,” she said.