6 COVID-19 Safety Tips for People With Disabilities Who Need Home Care

by Karin Willison, Founder of Pandemic Pal

Home health aides. Personal care attendants. Direct support professionals. They go by many names, but these essential home care workers help seniors and people with disabilities with everyday tasks such as dressing, bathing, housecleaning, and participating in community life. They are among the most critical members of our workforce, but they’ve been largely forgotten since the COVID-19 pandemic began, except by those of us who rely on them to care for ourselves and our loved ones.

People cheer for doctors, nurses, grocery store workers, and janitors — as they should — but often have no idea there are also millions of home health care workers struggling to get by on extremely low wages while trying to keep those they help safe from a deadly virus. They are under-appreciated and deserve better.

I am a person with a disability, cerebral palsy. Most of the time, I lead an active life with the support of my personal care attendants — I go shopping, attend concerts and theatre, and spend time with friends and family. I’m also a travel blogger — I road trip around the USA and write about my experiences. But now, all that has changed. Since I am at high risk of deadly complications if I were to contract COVID-19, I have to completely social distance from other people. Until there is a vaccine or treatment, I cannot go to any public places or be near my friends and family. Yet I still need someone to come to my home each day to help me use the restroom, shower, cook, and more.

For people with disabilities like me who need home care services, letting someone into our home puts us at risk of contracting COVID-19. What can we do to minimize that risk and keep ourselves and those around us safe? Like everyone else, I’ve never been through this before, but here’s what I’ve learned so far about managing and supporting home care workers during the coronavirus pandemic.

Navigating life when you need home care for a disability during COVID-19. Karin sitting outside in her wheelchair with service dog Aria.

1. Communicate with your home care workers about the COVID-19 pandemic.

It’s always important to communicate clearly with personal care attendants, home health aides and others you bring into your home to care for yourself or your loved ones. Honest, detailed, and specific communication with home care workers is even more important during the coronavirus pandemic.

Talk to your home care workers about their risk of being exposed to COVID-19 and how it can be reduced. Make expectations for social distancing clear from the beginning and follow up often. During the first few weeks of the pandemic, I would check in with each of my personal care attendants the night before their first scheduled shift of the week. I would ask them if they were feeling sick or if anyone around them is sick. By now they know I need to be informed as soon as possible if there’s any chance they’ve been in contact with someone who is ill, so I no longer do the weekly check-in. However, you may find it useful to continue if you’re concerned someone might not report a potential COVID-19 exposure.

Ask your direct support workers about the challenges they are facing during the pandemic. Be honest about how you’re feeling, too. If you’re open about your own struggles, they will feel safer sharing their own.

This is an extremely stressful time for everyone, and tempers may flare. Try not to hang onto grudges and don’t sweat the small stuff. The more honest we can all be about what we’re experiencing, the better we can address misunderstandings when they happen and resolve small problems before they turn into big ones.


2. Ask personal but necessary questions with respect and kindness.

During the coronavirus pandemic, you may need to ask your home health aides somewhat personal questions about their lives and activities. I am taking very intense measures to protect myself from COVID-19, so I’ve had to ask each of my personal care assistants about what they do when they’re not at work, and about the other people they come in contact with on a regular basis.

For example, I had to ask one of my PCAs about her boyfriend’s job. This is not typically something I would ask about unless it naturally came up in conversation, and usually the answer would not matter. But right now, it does. I also asked about her child custody situation and what her kids’ fathers are doing for work. Thankfully, they were all in low-risk situations, so this knowledge eased my mind.

When I asked these questions, I was apologetic. I explained why I needed to ask and that I typically would not require this information. Of course, your relationship with your home care workers may differ. I have some who tell me everything, and others who prefer to remain more private. So if you find yourself asking questions you normally would not ask a particular person, be sure to explain clearly why you need to know.


3. Provide personal protective equipment, especially masks and gloves.

If you employ your own home care workers privately or through a consumer-directed Medicaid waiver, you are responsible for providing them with personal protective equipment such as masks and gloves. Even if they are employed by an agency, providing these supplies is the right thing to do. To further minimize your risk of being exposed to COVID-19, you should also provide them with masks to wear outside of work for essential errands such as grocery shopping. Most direct support workers live paycheck to paycheck, so finding and buying masks can be a challenge. If you provide them with equipment, you can also more reasonably require them to use it.

I created Pandemic Pal because I was having trouble finding N95 masks and even gloves in stock on Amazon and other websites, and I need to provide these items to my personal care assistants for their safety and mine. Our listings are automatically updated, so you can find what you need in minutes instead of having to search many online stores.


4. Offer a raise or bonus if possible.

Although I receive some funding from Medicaid to pay my personal care assistants, it has never been an adequate wage, so I supplement it. I’ve been able to give a small raise to each of my personal care attendants during the pandemic. I gave this in appreciation of their job performance, and to help offset extra costs they are currently facing as a result of needing to practice social distancing to work for me. I highly recommend doing this, even if it means you must have a few less hours of help per day or week. Quality is better than quantity.


5. Consider prohibiting your support workers from taking high-risk second jobs as a condition of employment.

This is a tricky one, because most in-home care jobs don’t pay enough to get by, especially if you’re employing someone part time. However, there’s also the reality that the worst and most deadly COVID-19 outbreaks have occurred in congregate care settings, such as nursing homes and group homes. If your home health worker is also employed in one of these settings, that puts you in extreme danger of being exposed to the coronavirus. As such, I believe it’s reasonable to choose not to hire someone who is working at a nursing home or group home, and to limit your workers from also working at a care facility until the pandemic is over.

If you can give a raise, it gives you more leverage to require safer behavior and lower-risk second jobs. You can also help by suggesting other jobs they could do or even helping them launch a new venture. There are plenty of safe side hustles they could do from home, such as freelance writing, creating art to sell, sewing masks to sell on Etsy, and so many more depending on their skills and talents. Even delivering food from restaurants is a safer choice than working at a nursing facility.


6. Your safety comes first.

People with disabilities and health needs are encouraged and sometimes pressured to be flexible and accommodating. Of course, we should always be courteous and respectful of our home care workers. However, during this time, you must make whatever choices are necessary to keep yourself safe from the coronavirus.

You may feel bad about asking caregivers not to attend large gatherings or go to the nail salon even though businesses have reopened in some areas, but it’s essential to minimize your risk.

You may find you have to let a caregiver go who will not or cannot practice social distancing, or whose other job places you at high risk. This is an unfortunate reality, but it may be the only way to protect yourself. If you’re in the situation, be kind, and offer them some severance pay if possible. If they were a good employee prior to the pandemic, let them know you will hire them again once it becomes safe to do so.

Do you have tips for staying safe when you need care at home? Or do you want to share your experience as a home health worker? We want to publish your story! Email us.

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