It is estimated that millions of people will be joining the disability community due to experiencing PASC (Post-Acute Sequelae of SARS-CoV-2 infection), more widely known as post-COVID or long COVID. People experiencing long COVID can have a large variety of symptoms including difficulty breathing or shortness of breath, brain fog or difficulty concentrating, tiredness or fatigue, headaches, chest and stomach pains, loss of smell and taste, joint or muscle pain, lightheadedness, mood changes, sleep problems, worsening of symptoms after physical or mental activities (post-exertional malaise), and others. Those who experience long COVID may have had severe or mild symptoms after being infected with the COVID-19 virus. Even people who felt no original symptoms when diagnosed with COVID-19 have experienced long COVID.
I believe it is important for all of us living with disabilities to be the voice for these new members of our community in sharing knowledge on how to take the next step and showing people that there is so much opportunity still ahead. Right now, nobody knows how long symptoms of long COVID will last, or what the future holds. All we can do is respond to what is happening right now and be there for each other and support each other in this journey.
Today, the focus for many people experiencing long COVID is on how to maintain employment while experiencing symptoms that affect how they perform their job. The following tips provide perspective into the journey of living with disability and navigating employment processes.
Know your civil rights as a person with a disability. In guidance issued by the U.S. Department of Health and Human Services Office for Civil Rights and the U.S. Department of Justice Human Services Civil Rights Division, long COVID can be a disability protected under the Americans with Disabilities Act (ADA) in certain situations. It is imperative that you understand your rights, so you know what avenues you have available to you with regards to making requests of your employer. One resource that can be helpful is reviewing the COVID-19 guidance released by the Equal Employment Opportunity Commission. This is also a great place to go to understand your rights under the ADA.
When it comes to accommodations, you must take the first step. Accommodations requests almost always are the responsibility of the employee to initiate. People sometimes have a gut instinct to hide when they are struggling from their colleagues and managers, rather than engaging in processes that can connect them with the resources they need to continue to perform at the level they have in the past. Often this is due to people being afraid they will be seen differently or not wanting special treatment.
Accommodations are not the same as special treatment. They are tools that allow people to perform their job. Think about it this way. A person who is left-handed can adapt to using a mouse built for someone who is right-handed. The experience will be less comfortable, and they likely won’t be as quick to do tasks as if they had been given the correct tool, but they can muddle through. However, why should a person muddle through when they can just use the correct tool? Putting accommodations in place is all about ensuring you have the correct tools to do your job.
It is helpful to know what your goal is going into the process. Are you looking for a more flexible schedule to manage doctor’s appointments, work from home capability, tools to help you in your current role, or maybe you are looking at changing job roles? If changing job roles is your ultimate goal, update your resume and start looking at jobs available in your organization that you believe would be a fit so those can be discussed.
Understand your employer’s interactive process. Most employers will have a specific process they engage when an employee makes an accommodation request. Read everything available and if you don’t understand something, ask questions. Hitting deadlines is critical to successfully navigating the process. Immediately put deadlines on your calendar and schedule reminders to ensure you get all of your actions done in this process on time. It is ok to take notes or request documents outlining the process – most companies have documents already prepared. Making this request is highly encouraged if you are experiencing COVID Fog.
Be prepared that employers will often ask for medical documentation of your disability as a matter of course. Ensure you understand what is needed for this step and that you are taking action immediately. Don’t assume that your doctor is familiar with your rights and what to include in requested paperwork. You will need to provide guidance in this area.
As you navigate your way through this process, maintain all documentation and communications in one place for easy reference. You may need to go back and revisit something later.
Research accommodations options. If you are struggling with your day-to-day tasks due to symptoms of long COVID, there may be solutions out there to help you bridge the gap, but it is not up to your employer to present those to you. Check out the resources available at the Job Accommodation Network (JAN). You can research areas that might apply to you such as memory, fatigue, attentiveness, stress intolerance, coughing excessively, dizziness, organizing, planning, prioritizing, or respiratory distress and breathing problems. There will be recommendations of possible accommodations that you can explore. You can discuss these during the interactive process or with your doctor. Many of these solutions can even be no cost – so start trying them out at home to see how they work for you.
Become involved in the disability community. There are many ways you can become involved in the disability community today. You can sign up for list serves or online communities to receive information or connect with others. National cross-disability organizations like the American Association of People with Disabilities (AAPD) are a great way to be informed of what is happening in the disability community. Another great place to start is looking into what business resource groups or networks are available at your employer to determine if there is one dedicated for people with disabilities.
Reach out when you need help. If you are still struggling to figure out what you can do, reach out to the disability community, and ask for help. Begin by researching your states disability rights organizations. If the organization you reach out to doesn’t provide the service you need, ask them for a recommendation for other organizations you should talk to in your community.
Remember, when the process going forward is frustrating, that there are others out there sharing your experience – and people who are fighting for you. There are a lot of great people out there who will help you connect with the resources you need to navigate this journey. Becoming a part of the disability community may take your future in a new direction, but that future has as much potential and possibility as your old one – in the words of Temple Grandin it is “different, not less.”
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