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Coronavirus Complicates Access to Essential Care

TAY GLASS, HOST INTRO: Roughly 12 million people in the U.S. need long-term care, according to the Center for American Progress. Due to chronic conditions, disabilities or rare diseases, they need home health aides or personal care assistants to help them with the activities of daily life. But the coronavirus pandemic has complicated access to that care. Some aides no longer want to enter other people’s homes. And some people are wary about the exposure caregivers might bring, as Sarah Gelbard reports. 

SARAH GELBARD, BYLINE: Michele Kaplan is wearing a rainbow dress and rainbow socks. Colorful portraits she painted are lined up on the windowsill in her Manhattan apartment. 

KAPLAN: I love to write, I love to make art, I love to make music and listen to music. 

[Music, The Stooges]

GELBARD: She makes pandemic playlists on Spotify for every mood, with lots of sixties era rock n’ roll. She listens to the song “I Wanna Be Your Dog” by The Stooges when she’s frustrated. 

[Music, The Stooges]

GELBARD: She says it makes her feel “kinda badass.” 

Kaplan describes herself as proudly disabled. She has a neurologic condition and needs personal care assistants, or PCAs, 8 hours a day, 7 days a week. 

KAPLAN: I used to work but my health went [sound effect] and so that was back in 2006. Right now, I’m mostly bed-bound.

GELBARD: Recently, it’s been really challenging to find consistent care. One of her regular assistants abruptly stopped working when the pandemic began. 

KAPLAN: One day she just sent a message saying, Hey, Michele. She was supposed to come in like that morning. She was gonna come in and then around 10 o'clock, she's like, I'm not coming to work. And she just did not feel safe coming to work and then all of a sudden, I have no PCA for the week day.

GELBARD: The assistant didn’t feel safe working without personal protective equipment, which her agency wasn’t providing. Then, one of Kaplan’s other assistants got sick. And another decided to stay home for his immune-compromised partner. Kaplan had to replace them with strangers. One was also working in a hospital, which made Kaplan nervous about her exposure to the virus. The next spoke a different language. 

Dana Arnone runs Reliance Home Senior Services, an agency in Queens. She’s spent $30,000 dollars to provide her employees with personal protective equipment. But many of them are still choosing to stay home. Schools are closed, they have no childcare, they are afraid of exposure to coronavirus.

ARNONE: They’re terrified to get on a bus. They’re terrified to get on the subway. But they’re getting up, they’re going to the patient’s home, they’re fully gowned, they’re masked. And they’re just as fearful at times to go into the patient’s home, as well as the patient is afraid to have them in their home as well.

GELBARD: Even though clients need this care, they’re making difficult choices to try to limit their exposure. 

97% of agencies across the country reported that some people have chosen to discontinue use of aides during the pandemic, according to the National Association for Home Care and Hospice.

Sometimes, family members are stepping in to fill the gaps. Ariella Barker is an attorney, and a graduate student at Harvard. She has Spinal Muscular Atrophy, a rare and progressive neuromuscular disease. 

When her assistant couldn’t access coronavirus testing, Barker chose to rely on her mother as a full-time caregiver. But in the end she still found herself exposed to risk. A couple of weeks ago, she developed a UTI and had to go to the hospital.

BARKER: Ultimately, I had to go into the doctor’s in a hospital. I encountered quite a few people just to be able to ensure that I was getting the proper treatment.

GELBARD: People who require care can’t isolate themselves, says Michelle Meade. She’s a psychologist at the University of Michigan. 

MEADE:  It's not just then your own personal behaviors. It's the behaviors of those individuals you've come into close contact with that you're impacted by.

GELBARD: Meade says those with certain chronic conditions may have higher risk for complications if they contract coronavirus. 

Lifelong New Yorker T.K. Small is aware of the risks, but he decided to maintain his regular team. Like Barker, he has Spinal Muscular Atrophy. He needs assistance with any physical activity. 

SMALL: So everything from washing, getting dressed, going to the bathroom, meal preparation, I need my attendants to help me eat because I can't chew and swallow all that well. 

GELBARD: He feels fortunate that his assistants continue to come to work for him. while he knows other assistants have stayed home.

SMALL: Other workers had kids or family members that they had to stay home and take care of, and they understandably couldn’t put the disabled person ahead of the family member so the disabled person got put on the backburner.

GELBARD: Now, his assistants are wearing gloves and masks, and aggressively cleaning cell phones, door knobs and countertops. He would rather have them keep working so he can maintain his quality of life. He’s been practicing law for over 25 years. 

SMALL:  I like the life that I lead. Is it perfectly safe? Maybe not. I don't want to be so protective and afraid of everything around me that I end up just afraid, I can't do that. I can't do that. I'm certainly exposed. But I don't really see that I have a choice.

GELBARD:  Coronavirus may complicate care. But he thinks it’s still essential.

Sarah Gelbard, Columbia Radio News.

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