Frontline Initiative: DSPs Respond to COVID-19

Gripping headline: “Vaccine Mandate Could Displace Group Home Residents with Disabilities!”

That’ll grab your attention. It certainly did mine. The article in the Portland Press Herald spoke to the impending requirement for COVID-19 vaccination among DSPs and others working in Maine group homes. The very first sentence of the article?

Maine’s “COVID-19 vaccine mandate for health care workers could force nonprofit group home operator[s] to kick out some residents later this month because there won’t be enough staff to care for the adults with intellectual disabilities who live there.”

Now that is provocative! But is it true? Do we automatically pair vaccine mandates with DSPs leaving the field of supporting people with intellectual and developmental disabilities (IDD) in droves?

In September 2020, more than a year ago, the community-based provider organization for which I work announced that vaccination for COVID-19 would be mandatory for all staff. This came, of course, before there was a vaccination, but we thought it important to communicate our policy as early as possible in order to allow us lots of time to walk carefully through the many issues that seemed, even then, to be inevitable. In the end, we lost 13 of 274 members of our staff in total. Ten of them were DSPs. Our total losses of staff through the vaccine mandate totaled less than 5%.

Soon after the outbreak of the pandemic, we established frequent and ongoing communication with all staff. We reached out and connected. We shared information. We talked openly about our fears.

I should note: These were good, many of them outstanding, staff. Most important of all, they are good humans. And we lost them. While we were then, and remain now, confident that our mandatory vaccine policy was the right thing to do, losing wonderful co-workers hurts.

Rollout of the mandatory COVID-19 vaccinations for all staff

What we did between our September 2020 announcement of our policy and the deadline for compliance in May 2021 is what we think is important to share. On its own, it tells an important story.

Soon after the outbreak of the pandemic in March 2020, we established frequent and ongoing communication with all staff. We had then about 30 different locations, supporting about 200 adults with IDD and about 275 total staff. We reached out and connected. We shared information. We talked openly about our fears. We tried to encourage an agency-wide dialogue with people we support and our staff through the uncertainty of those early months. No scripts. No formality. Just us. All of us. In it together. Every Tuesday afternoon at 4.00 p.m. was our Coffee Chat—by Zoom, of course.

Some Coffee Chats went two hours and had 200+ people in them. Others were shorter and had 30 people in them. We shared and dissected the latest research, the latest data, the latest news reports. We cried some, laughed some, and we supported one another. People we support lost their lives to COVID-19. When that happened, we mourned together. We leaned on one another. Titles meant nothing, other than to regularly recognize that it was our DSPs who were our inspiration, our leaders and yea, our heroes.

Coffee Chats provided dialog with medical experts and DSPs

We had our three-member Medical Advisory Panel join us for a few of these Chats. This was formed very soon after we recognized that the pandemic was deadly serious. This included three physicians (one of whom is well known to NADSP, Dr. Rick Rader) who have extensive experience working with people with IDD and the DSPs who support them. They answered every question, addressed every myth, and detailed every scenario presented to them by our staff. When they knew answers to hard questions, they offered them. When they didn’t know, they said so. You’ll note a theme—it was then, as it always is—essential to be honest and transparent. Provider organizations ask this of their DSPs constantly. The very least (and I mean very) provider organizations can do is to do the same.

As days blurred one into the next and the weeks into months, we shared up-to-the-minute information from a variety of credible sources. We were monitoring for every update, new research, and datasets that would inform our decisions as an organization. We taped weekly videos for our staff and for the community to update everyone on what we were doing and what we were learning. We did Facebook Live broadcasts, did a weekly e-Blast, all designed to keep people engaged and alert and informed.

In the summer of 2020, we started paying close attention to global work on vaccines. As it became clear that clinical trials were underway around the world, we decided that we would mandate the COVID-19 vaccine. We talked often and openly about all of this.

It’s important to note that by this point, more than 10 of our DSPs had contracted COVID-19, one of whom was hospitalized and eventually intubated. Thankfully, he survived, but we knew and experienced, firsthand, the devastation of the virus, and the fear that we were all experiencing was palpable.

Not long after we announced our policy, we held a special COVID-19 Vaccine Q&A with our Medical Advisory Panel. We followed that with another Q&A, and then another.

In January 2021, the Moderna vaccine was made available to essential healthcare workers, a designation that was applied to DSPs in Maryland. In February, through our partnerships with CVS and Walgreens, the Pfizer/BioNTech vaccine was made available to the rest of our staff and the people we support.

Overcoming fears and anxiety around getting vaccinated

I don’t recall which Coffee Chat it was, or which Vaccine Q&A it was. I do recall, though, as if it happened yesterday, the moment “it” happened. It struck me like a thunderbolt, and it’s one of those moments that changes the course of an organization’s history. We were talking about our fears and our worries about COVID-19 and the vaccine. In the midst of the conversation, a DSP raised his (Zoom) hand and started to speak. As he spoke, you might have heard a pin drop. He talked about his own fears and anxiety around getting the vaccine. He shared his thoughts on whether he would get the vaccine or leave the agency—that was the choice he faced. He shared all of it with us, his colleagues and co-workers. He led us through his choice to “get the shots.” He shared why he made that choice and how he overcame his fears. And he asked those of us who were still on the fence to join him, to overcome our fears and choose the vaccine over leaving the organization or worse yet, getting COVID-19.

In the midst of conversation, a DSP raised his (Zoom) hand to speak. As he spoke, you might have heard a pin drop. He talked about his own fears and anxiety around getting the vaccine. He shared how he overcame his fears.

For all the data, research, and science we’d shared, it was the power of this DSP’s leadership that was the tipping point for the whole organization. Over the weeks that followed, staff who hadn’t yet been or couldn’t be vaccinated sooner went about becoming vaccinated. By March 19, 2021, nearly all of our staff and nearly all the folks we support were vaccinated. Today, we are 100% vaccinated among our staff and 99.1% among folks we support.

Informed Decision-Making

As I’ve thought about this journey, it occurs to me that we unintentionally adopted a Supported Decision-Making (SDM) approach to it. We talk a lot in our field about SDM when it comes to people with IDD. It’s a philosophy in which we believe as fundamental to self-determination and self-direction. In our case, without realizing it until after the fact, we’d applied SDM principles to the way we approached our employees as they faced the decision to be vaccinated or not.

I believe the headline that I shared at the beginning of this article both underestimates the commitment of DSPs in our field and ignores critical obligations of the provider organizations at which they work. We all are entitled to our natural fears and misgivings about vaccination. But our DSPs are smart. They want and deserve open, honest, and timely information—and, critically, the support from their co-workers (I’m especially looking at you, organizational leaders with fancy titles)—to process and make informed decisions about their options. That, friends, is the essence of SDM, and if our experience is any indication, it works.

Assuming that vaccine mandates will inevitably result in significant losses of staff is, dare I suggest, intellectually lazy. Yes, some employees will simply not reach a level of comfort to be vaccinated. We had 13. But our obligation to our employees is to assume their good intentions. They want to be healthy and safe. They want support—holding their hand, literally and figuratively—as they undertake the journey to their decision. It’s work. It requires resources that provider organizations must invest. But our DSPs are worthy of every bit of work and every resource. We’ve spent 18 months rightly telling the world that our DSPs are heroes. Let’s treat them accordingly.

References

• Lawlor, J. (2015, October 15). Vaccine mandate could displace group home residents with disabilities, operator says. Portland Press Herald. https://www.pressherald.com/2021/10/15/maine-reporting-551-new-cases-of-covid-19-and-5-deaths/

Resource

COVID-19 Hesitancy Project: John Raffaele Interviews Awa Johnson and David Ervin  

In this podcast from the NADSP Point of Interaction Series, John Raffaele interviews Awa Johnson and David Ervin. Recorded December 15, 2021.