From Access Living CEO Karen Tamley


March 30, 2020 | by Karen Tamley

Access Living and More than 140 Illinois Organizations Request COVID-19 Treatment Protocols for People with Disabilities

Access Living friends and allies,

I hope this message finds you and your loved ones safe. At this unsettling time, our work is more essential than ever, and the entire team at Access Living has been doing all we can to elevate disability issues and services so that they are taken into account in every part of the COVID-19 crisis response. We know that lives are at stake.

When medical professionals don’t have the resources they need, that impacts people with disabilities in a number of ways, from managing aspects of disability day-to-day with the support of medical staff, to being treated for COVID-19. 

It will take time to address everything people with disabilities are facing during this time, but there is one aspect that simply cannot wait.

Taking Action to Defend Our Rights Related to COVID-19 Treatment

As we’ve watched COVID-19 overwhelm the healthcare system in Italy and other parts of the U.S., we know that our own medical professionals here in Illinois may soon have no choice but to decide who gets care and who doesn’t. When that happens:

  • The necessary rationing of COVID-19 treatment must NOT put the lives of people with disabilities at unnecessary risk and violate our civil rights. 
  • Assumptions about the “quality of life” or the “health” of people with disabilities must NOT promote dangerous biases. 
  • Emergency triage must NOT be susceptible to bias on the basis of disability, race, income, gender, sexual identity, or other marginalized communities.

Access Living, and more than 140 other organizations that signed on with us, have urged Illinois to take immediate steps to eliminate bias related to COVID-19 treatment. 

Take a look at the letter we sent to the governor last week, and watch for more developments on this in our advocacy alerts.

Responding to pressure from advocates in a range of states, on Saturday, the U.S. Department of Health and Human Services Office of Civil Rights (OCR) put out guidance that stated that disability (and other) discrimination would not be allowed, but we need to make sure a state protocol is in place so that discrimination doesn’t happen.

Another Urgent Issue: Help with Personal Assistants

On a separate note, we’ve heard recently from many who rely on the support of in-home personal assistants, which can make social distancing difficult if not impossible, about staffing concerns. Remember, the “stay at home” order makes it clear that disability related services and supports are part of the essential functions needed to continue operating in every community. That includes personal care services and direct support services. Also know that the Division on Rehab Services is putting in place an emergency personal assistant back-up program that will be administered through the Illinois Network of Centers for Independent Living (INCIL). If you currently receive home services through the state and need an emergency PA due to COVID-19, you can call us at Access Living or call INCIL at 1-800-587-1227 for help.

Keep in Touch and Check Out Our Resource Page

In the meantime, please keep in touch with us. Our staff is working remotely and we are responding to calls and emails. Let us know how you are and what you need. Access Living remains committed to being here for you in the weeks ahead.

Be sure to take a look at our list of COVID-19 resources for people with disabilities — we update it every day — along with more details about our advocacy and service work. Disability advocates are speaking out and it’s making a difference!  As the new CEO, I want you to know that we will continue to be a force in the disability community. Keep it up and stay safe!

Karen Tamley

President and CEO

Access Living