While safety measures and shutdowns are active during the pandemic, some people with disabilities are negatively impacted by them.
JonChristopher Collins – May 28, 2021
Precautions like masking, shutdowns and virtual care are present to provide safety and more convenient care, but for some with disabilities, more difficulty can arise because of these safety measures.
This is the second article in this series on COVID-19 and the disability community. The previous article focused on the technology used by people with disabilities and the providers of that technology.
Whitney Malloy is a 35-year-old Missouri resident who uses a wheelchair and is an incomplete C5 C6 quadriplegic. According to the National Spinal Cord Injury Statistical Center’s Spinal Cord Injury Facts and Figures at a Glance 2020 SCI Data Sheet, “a recent estimate showed that the annual incidence of spinal cord injury (SCI) is approximately 54 cases per one million people in the United States, or about 17,810 new SCI cases each year.”
The same data sheet also states that the average age at injury “increased from 29 years during the 1970s to 43 since 2015.” The World Health Organization (WHO) has a post on their website from 2013. They acknowledge that a spinal cord injury might leave individuals with injuries needing assistive technology and caregivers.
Malloy has had this injury for 16 years; the injury was the result of a car accident. Malloy’s medical care was impacted by the pandemic. It affected her medical care staff too. “A lot of my staff would quarantine or left for COVID time. So, it made things difficult,” Malloy said.
Malloy said some solutions to that mostly involved training people who did not know how to do certain things; she said she had to train new people to assist her. In addition, Malloy has been affected financially by the pandemic. It has made her need to hire and train new medical care staff harder. Prior to the pandemic, about three to four people made up Malloy’s medical care staff; now people help her out, but she really only has one staff member. “People have just been helping out, but I really only have like one.”
She said when she had a full staff, it was with a company. Malloy gave the name of the company for the purpose of this article. Though Malloy needs to switch companies for medical care, the companies she has looked at have no staff. “They didn’t have staff, so I haven’t been able to find a company yet. So, I’ve been having to find staff and pay them out of pocket,” Malloy said.
When she normally finds a company, it is a government program; however, as Malloy said, the companies she has looked at have no staff. Malloy lives in Missouri. “Pretty much all the companies in Springfield said no pretty much because they didn’t have the staff availability.” Malloy said this has made it more difficult.
Malloy said her service coordinator made contact with all of these provider companies; all of these companies could not help Malloy. An attempt was made to speak with Malloy’s service coordinator for this report regarding the discussions with these companies. The service coordinator could not comment because they could “probably” lose their job as a result.
Malloy added that the hardest thing for her through this time has been wearing a mask. “I don’t have full use of my diaphragm anyway, so it made it a little harder to breathe.”
Staying home and “mostly not going anywhere” has been one of Malloy’s solutions for that. Malloy said that phone conferences have been helpful to her in this time as a disabled individual.
Malloy said that she wore a mask because one was required to ride the Access Express bus. “You had to or else they wouldn’t let you on the bus.” She added that she did not know it was possible to get a medical exemption for masks.
Regarding what can be improved medically, Malloy touched on training and education on spinal cord injuries among other related issues. “People need to be trained or more educated in dealing with spinal cord injuries, bladder and bowel,”
Malloy unpacked some of her reasons for saying that. “I have a wound by my urostomy, and I can’t get homecare to come out here because they are not educated in urostomies, so they won’t come out here and treat my wound.” She added that this is because they do not really know of anything in her area of residence for urostomies. Malloy said the medical field has been ill-equipped to deal with something like that for years. Urostomies aid the passage of urine.
The effects of COVID-19 have made the issue of the wound near Malloy’s urostomy more difficult to take care of. “I think that’s one of the reasons why the majority of the companies said no is because they were trying to limit how many of their staff they had going out to peoples’ houses. Every company said no, that they wouldn’t, and I was like I don’t know if it’s because of the location, or they don’t have the experience with it or if it was mostly because of COVID. Because I’ve had a wound before and companies have always came out and took care of it, so I didn’t understand why this was any different.” Malloy added that she has still not been able to have her wound cared for and that she has reached out to every single company and they have all said no to her request.
Assistive Technology Professional (ATP) Craig Moulden said he is not surprised by these companies declining to provide service. He has had over 20 years of experience in the industry of Complex Rehabilitation Technology (CRT); Moulden provided communication he had with home health professionals. In these communications, one professional admitted to there being a shortage and said that nobody has enough nurses now. Another professional stated that there is a problem with finding staff right now and mentioned that people are drawing upon unemployment instead of working.
Delia McDowell is Malloy’s mother. McDowell confirmed that her daughter has not been able to receive the care she needs. “They [Malloy’s previous company] told her [Malloy] that they were not going to be her provider anymore, and so they tried to find another company, and of course she’s been told that nobody has any workers available,” McDowell said. Now McDowell has been doing Malloy’s care protocol.
McDowell said her daughter has a meeting in the next week or so. “Hopefully they’ll find somebody. If not, we’re in a pickle; we’ve been having to pay out of pocket for people that she has found to come over with different shifts.” McDowell also confirmed that her daughter’s staff normally consists of about four people when it is through the government program.
“They really need the care; they’re the ones that really need this,” McDowell said when commenting on those who need care not being able to get it due to short staffing among these companies. McDowell also confirmed that Malloy has not obtained the care she needs for her wound.
“Oh we can’t touch that [the wound],” McDowell said the company told her daughter Malloy. Because of that, McDowell came over to care for Malloy’s wound a couple of times. McDowell said one employee that was with the company “didn’t mind changing it and she didn’t tell anybody or tell the company.”
Had the urostomy been properly taken care of, McDowell said she does not think Malloy would have the wound she has. “They let it go on to where it got really bad,” she said. McDowell said she does not know if they are not trained to see things like that, adding that caring for the urostomy is “not that hard” and that she thinks everyone should at least learn to do that.
McDowell said witnessing her daughter Malloy go through this has changed her whole life. “I’m not the person that I used to be. It’s changed my whole life. I’m depressed. I want her to live a good life and be taken care of, not by me because I want to have my own life. But she can’t seem to get people to take care of her right.” McDowell also said it will be “a cold day in Hell” before she sends Malloy to a nursing home. “She doesn’t belong in a nursing home; she’s only 35.”
McDowell said it has been a struggle to watch her daughter’s situation through this pandemic and that Malloy has been really upset. “I don’t understand why they’re having trouble finding people. I don’t know if it’s a fear of going in the home, or if it’s this thing where they can stay home and draw money [unemployment].” As of May 28, Malloy said she has “not really” made progress on receiving care and that the companies still have no available staffing.