3 Ways To Help Disabled People Through The End Of The Pandemic
We have already been through a couple of false endings to the Covid-19 pandemic. But finally, there really are solid reasons to think that it may really be ending, or at least becoming a different, less dangerous and disruptive problem than it has been for the last year. This is good news for disabled people, as it is for everyone. But this transition will be a lot easier if a few of our unique needs can be met.
People with disabilities have disproportionately suffered from the pandemic. We have been devastated medically, through our disability-related vulnerability and dangerous medical responses to it. We have been hindered practically, because of the extra difficulties we face in protecting ourselves. And like everyone else, we have been affected socially by a year of isolation and stress.
A report this February showed that 6 out of 10 people in the United Kingdom who died of Covid-19 were in some way disabled. Clear data on how the pandemic affected disabled people in the U.S. is a bit harder to assemble. But what information we have from various sources and angles also confirms that disabled people in general have suffered more than most from Covid-19.
Disabled people have experienced the pandemic differently, and we are still going to need some different approaches as we reach its end or phase-out. Here are three key ways to help make the last few months of the pandemic a little easier for us.
1. Make vaccines truly accessible.
Since December when the first effective vaccines were announced, disabled people have been arguing to be among the highest priority to get vaccinated when low supplies made rationing necessary. In many states we were excluded for far too long, given the scale of our higher risks and greater hardships. Some, like California, shifted priorities more than once – first prioritizing people with chronic health conditions, then prioritizing strictly by age, then going back to prioritizing people with some disabilities – within just a few weeks. More disabled people are now gaining eligibility, but too many states have been slow to focus on disability as a risk factor. In many states still we are excluded, and in some places, high risk disabled people may not get meaningful access to vaccines until they are open to the general population.
What Disabled People Are Thinking And Feeling About The Pandemic, One Year Later
How Covid Relief Will Help Disabled People, And What Was Left Out
Disabled People Are Waiting, Anxiously, For Lifesaving Covid-19 Vaccinations
Of course, eligibility is only part of access. The systems for actually getting our shots need to be accessible too. Lots of elderly and disabled people have had real difficulty registering for appointments because so much of it is done online. While internet applications are instinctive and accessible tools for some disabled people, for others they are barriers in themselves. Poorly-designed and erratically accessible appointment websites have added new layers of frustration and anxiety for many disabled people. Those tools need to be fixed, and other, more personal and “analog” ways of scheduling vaccinations need to be opened up and improved for the process to be close to truly accessible.
Accessibility at vaccination sites is also critical. Both transportation and on-site accessibility details need to be right all the time, in every location – not just where organizers are extra caring and helpful. Drive-thru sites are perfect for those of us who can drive or reliably get a ride – no link walks into unfamiliar buildings, no standing in line – but many of us don’t have good transportation options. Walk-in sites are better for non-drivers, if they are close enough to where people live. But they can be a real challenge and deterrent for people who need wheelchair accessibility, can’t walk a long distance, or are unable to wait in line for a long time.
Meanwhile, some of the most “severely” disabled among us are at the highest risk from Covid-19, would benefit more than anyone from vaccination right now, but face the steepest barriers to getting vaccines in any of the usual ways. Despite unique logistical complications with storing and properly using some of the vaccines, home vaccination visits will be necessary at some point – hopefully sooner rather than later. It will be labor-intensive and difficult to organize. At the same time, most disabled people who can’t easily leave their homes have at least some connection to medical professionals or service providers that can facilitate a more individualized approach to vaccination.
It looks like there is a Federal effort about to get underway to help make vaccines more accessible. Hopefully there will be fast follow-through.
2. Give us accurate guidance, and freedom to act on it.
Like everyone else, people with disabilities crave clearer information on what we can do safely and responsibly after vaccination.
What is and isn’t safe for us, taking into account our specific disabilities and chronic illnesses? How can we do our best to continue protecting the community as well, while we come out of isolation and start taking care of important tasks we have been putting off? At the moment, the best and most honest answers available are often vague. Since we don’t yet know everything about how these vaccines work, or how Covid variants will develop, “We don’t know” may be the right answer. But as we all learn more going forward, disabled people in particular would benefit from more targeted and clear communication of what information we do have. Disability service providers and specialist medical professionals need this information too, so they can respond in a more one-on-one way to disabled people’s questions.
People with intellectual and developmental disabilities have been in even more of a bind this past year. We have all had to isolate ourselves and restrict our activities. But people who already lived in highly supervised settings, like nursing homes, group homes, and “assisted living communities,” have had even less personal choice or physical freedom, and often very poor communication about the purpose and rationale for pandemic restrictions. It has often been hard for disabled people in these situations to distinguish between fair and prudent rules and practices, and those that are more arbitrary and imposed by congregate care facilities for their own convenience. As more of the people they serve get vaccinated, disability agencies that are deeply involved with disabled people’s everyday lives should be thinking even more than before about creating a better balance between protection and independence. And getting accurate, accessible information directly to people with intellectual and developmental disabilities needs to be a very specific goal and priority.
Meanwhile aging and disability policymakers should be looking much more seriously at longer term ways to avoid and move away from congregate care, so future outbreaks and pandemics stand a chance of being less deadly. A huge percentage of infections and deaths from Covid-19 were people living in congregate care – nursing homes, group homes, and other institutional living situations for elderly and disabled people. So many of these deaths might have been avoided if we depended less on closed, crowded “facilities” to meet elderly and disabled people’s everyday assistance needs.
We can’t undo what’s already been done. But this probably won’t be the last pandemic in this century. And this one could still go on in some form for a good while longer. But with the current emergency fading, we shouldn’t stop looking very critically at the congregate care model, and at the very least investing much more heavily in decentralized home care, which is inherently safer in a public health crisis.
3. Give us space as we readjust.
Some disabled and chronically ill people have always had to be extra careful about infections for medical reasons. Others struggled with a mental overload of fear about infection long before Covid-19. With the pandemic, such fears suddenly became more rational and “normal” for everyone. We have all recalibrated our sense of the dangers of infection, and the risks involved in our most basic movements and habits. We are all going to struggle to reset once more to a healthy balance between sensibly protecting ourselves and our community, and holding on to heightened and debilitating fears long after they are really necessary.
We need our friends and relatives to be patient with us as we figure this all out. If we aren’t quite ready exactly when you are to hug, eat in a restaurant with you, or enjoy a big family reunion, give us time. And don’t laugh at us or get annoyed if we continue wearing a mask in public places, when most everyone else has stopped.