by Ericka Jones
This is an uncertain period during the COVID-19 pandemic and the senior and disabled communities have been hit hard. Since we first learned about the virus; the infection rate and death toll has skyrocketed and now, the United States is leading the charge in most infected people in the world. More people have died or been infected by Coronavirus in New York and New Jersey than the rest of the country added together. More recently, the Centers for Disease Control (CDC) began to say that COVID-19 will most likely not be lessened until Fall. This is likely speculation as there are no real firm predictions. In this pandemic, the cracks in our systems are coming to light and showing where we fail the Disability Community.
Why are disabled people hit the hardest you might ask? Because statistically we are 1 in 4 people in the United States many of which are immunocompromised or rely on other people and devices to stay alive and independent. Many of us are not able to safely get supplies, do not have transportation to do so, or do not have the funds to be able to stockpile for weeks at a time. This is just a small handful of barriers that impact a disabled person’s life regularly… now factor in the Coronavirus and the barriers increase tenfold. What is most concerning is the significant increase in deaths in nursing facilities, institutions, and group homes.
Nursing facilities are not a place where many people in the Disability Community want to go or grow up dreaming they will one day end up. They are understaffed, unsanitary, abuse runs rampant, and many people do not get enough human interaction after they go in and so the survival rate is not very high. Advocates in the Disability Community have been calling for more Home and Community-Based Services (HCBS) for years rather than giving more money to institutions for these reasons.
With the Coronavirus pandemic, we have seen that these nursing facilities and other similar institutions have become cauldrons of infection. The virus is opportunistic so it’s a perfect setting to attack those who are packed into nursing facilities like sardines and with proven questionable standards for cleanliness and sanitation. Further, locking down facilities has not proven to lessen the impact when shift workers are allowed to come and go as they please. In Rochester, NY, a man snuck into a hospital’s maternity ward to visit his wife knowing that he was symptomatic. This means that every person he interacted with that day was possibly exposed. Bus drivers are going to work unaware that they either have the virus or have been infected that day by a passenger, some even dying before they realize. There is no telling who has been infected before they step through the institution doors.
States are failing the Disability Community by not seeking advice from disabled people. California State Governor Gavin Newsom’s newest plan is to take people infected with Coronavirus and place them in nursing facilities while also adding 1,000 new skilled nursing facilities. Dr. Michael Wasserman, President of the California Association of Long-Term Care Medicine, called the plan “medically and ethically wrong”. He stated that if it were him, he would sooner take a family member home than to go along with the Governor’s plan. This is a common theme recently with legislators not listening to medical professionals. It’s essential to hear from those who have to deal with the aftermath of COVID-19 because in many cases, infection could have been easily avoided.
What we all have learned from this is that state governments have not been listening to what the Disability Community has been screaming in their faces for YEARS, and they need to do what is right to make everyone safe. This is a good opportunity with everyone at home, to call your legislators and talk about how dangerous institutional settings are. Otherwise, the best thing we can do as a community is to continue to work together to provide for each other, stay at home and find a better HCBS solution for family members who are currently trapped in institutions and facilities. If you need assistance with figuring how to transition your family member from an institution to their own home, call your local center for independent living. If you don’t know where your closest center is, go to ilru.org and look at the directory for your state.
About the author: Ericka Jones is a disabled activist and organizer in ADAPT for the last 5 years