It is appalling that individuals with disabilities and the family members that serve as their caregivers are not being prioritized in the coronavirus vaccine rollout. 

Across the country, we are being turned away. We are spending hours crafting emails, making phone calls, pleading for some help to keep our high risk loved ones safe. 

Blatant ableism abounds. 

The Centers for Disease Control and National Institutes of Health clearly define family and friends serving as caregivers to be “unpaid homecare workers.”

But the final decision falls on local and state health departments. Somehow they don’t see what is clear as day: individuals with disabilities are high risk. And their caregivers are on the frontlines in protecting them. Our homes serve as healthcare facilities. We have closets full of durable medical equipment, feeding supplies, tools to support behavioral needs. Many of us are caring for someone with a Medicaid waiver (or on waiting list for one) – providing medical care and other services at home or in the community; “waiving” the right to institutionalized care. Home and Community Based Services (HCBS) are a cornerstone to independent living for people with disabilities. Yet those utilizing HCBS have been largely forgotten in the vaccine rollout.

The kicker is that getting this vaccine as soon as possible has nothing to do with resuming life as normal. That won’t happen for us. We’re not begging for this shot so we can go to restaurants or hug grandma or hang out with friends. That’s still a long way off for us. 

Caregivers NEED this vaccine because our child is high risk. Because we are serving as nurses and full time caregivers to a disabled person. Because, in many cases, we are the only one in that person’s life who can care for them. Because even if we have personal care attendants or respite providers, they rarely offer 24/7 coverage, are often unreliable, are difficult to find because of low wages, or currently cannot come to our homes because our child is too high risk to bring in outsiders during a pandemic. 

We NEED this vaccine because if we get covid-19, not only can exposing our child potentially kill them; but our child has NOWHERE to go. The level of care is too great. Our homes are set up as healthcare facilities and behavioral sanctuaries. Many children need the routine and structure that their home provides. Sending our children to a friend’s house is not an option. Even if we have family nearby, that doesn’t mean that they’ve been trained to administer medications, feeding, breathing treatments and the like. Nor does it mean they have any idea how to handle challenging behaviors. 

Individuals with disabilities and their caregivers need this vaccine because of the discrimination those with disabilities face when seeking medical care – not just for covid-19 but in general. We need protection from the virus AND the dangers of implicit bias when it comes to medical care for the disabled. We need protection from the dangerous misperception that disability somehow means a degraded quality of life. 

This is not a matter of us trying to jump in line. This is a matter of keeping our children safe, in their homes, with the care and support that they need. And to be blunt, for many of us, this is a matter of life or death. 

Virginia has stepped up and recognized that caregivers need to be prioritized. Virginia has recognized that people with disabilities are part of the critical population needing prioritization. The commonwealth’s plans have not been perfect, but their efforts are admirable. 

For many Americans, waiting lists are long, phone lines are filled up, questions are being ignored. We’re so busy clamoring for a vaccine, we haven’t had the energy to address vaccine accessibility. What do we do about people who cannot wear masks – how can they enter vaccination facilities? What about people who cannot travel to the vaccine? While researching this article, one person suggested people with disabilities and their caregivers should get the leftover vaccines that would otherwise be discarded because of the refrigeration needs. The scraps, if you will. But there was no acknowledgement of how difficult it is to pick up and go at a moment’s notice. Transportation and leaving one’s home require planning and extra time. 

While we continue to sort through the inequities of this current rollout, we must stress that children with disabilities are at the front of the line when vaccines for ages 15 and under become available. Let’s learn from the mistakes being made now and not repeat them. 

And, when this pandemic is finally over, after we all take an unmasked deep breath, we must get back to work. We must ensure everything we’ve learned over the last year is documented. We need to start preparing for when the next disaster strikes so we’re never forgotten in a sea of chaos again. 

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