As I stare once more at the Johns Hopkins Coronavirus Resource Center, the number of deaths is incomprehensible. More than 385,000 in the United States alone. At the agency for which I work, which supports 220+ adults with IDD, and across the region in which we do our work, lives of people with IDD were taken by this wretched virus. The burden of these lives lost dampens my enthusiasm at having gotten ‘the shot.’
Many, many people, through the months, have asked, “how are you managing?” The subtext of the question and countless others that seek to understand how we’re navigating the crisis acknowledges certain inevitable realities: We were not prepared for a global pandemic. We had no precedent on which to rely. We had no inkling as to just how contagious… and deadly…COVID-19 would prove itself to be. All these things were then, at the outset of the pandemic in the US, and remain now true. And none of these things mattered very much when it came time to reacting to the realities we faced then and face now.
Our first scare at my organization came on March 7 last year, seemingly a lifetime ago. Someone we support in community living supports attended a community event at which, we would later learn, he was exposed to the region’s so-called patient zero. As it turned out, the person we support did not contract the virus. Less than a month later, two different people to whom we provide supports were not as lucky, as they became our first COVID-19 ‘cases.’ Both were hospitalized. Both were intubated. Both eventually came off the ventilators required to keep them alive, but only one would survive.
There was no doubt as to how folks we support in community living would be exposed—the direct support professionals (DSP) to whom our agency and our field owes so much were, paradoxically…and tragically…the greatest threat to people we support who, from the end of March, per Executive Orders from the Governors of both Maryland and Virginia, were effectively locked down in their homes. The typical comings and goings of the rotating, shift-based staffing model traditional to our organization and countless others, was the source of the threat, introducing new staff at each shift who were at huge risk of being asymptomatic carriers of the novel coronavirus.
By late April, we’d implemented, across all of our community living/group home supports a live-in model. Our DSPs committed to ‘stints’ of not less than two weeks, and we equipped them with what has turned into tens of thousands of dollars of supplies to support the model. From towels and bed linens, to air mattresses and cots, to personal hygiene supplies and items of creature comfort, we supported our staff who were leaving their own families to move in to their workplaces.
We set up armies of volunteers to deliver groceries and household supplies, gaming systems and all manner of activities, surprise gift boxes and care packages to homes across our community. We precluded family visits and restricted anyone from coming or going as was once the norm into or out of peoples’ homes. On May 7, 2020, more than eight months ago, we had our last (please, everyone, knock wood) COVID-19 positive case among the folks we support in group home supports.
Sounds impressive enough. And, it’s true, the change to our model was seminal in our fight against COVID-19. But, remember those two first cases? Only one survived their battle. We lost the first member of our family to the virus. It didn’t come quickly. He was, this exquisite human being, a fighter. For three months, he fought and he scrapped to regain his strength, to battle back to health. Each day that passed brought us closer, we imagined, to his full recovery. He would star in, we imagined, one of the news stories, leaving the hospital to rapturous applause for his spunk and his will to survive. Nearly three months after his first symptom emerged, he lost his battle to COVID-19.
We were crestfallen. Defeated. Utterly crushed by the enormity of the loss. It remains, nine months after he was hospitalized, raw.
Our focus remained unwaveringly on everything necessary to mitigate risk, to look carefully after our DSPs, to develop risk mitigation, infection control, testing, and a host of other far-reaching protocols to address everything we could contemplate. We were then, and remain now, incredibly lucky to have the financial support of our community, so we were able to dedicate financial resources that other agencies don’t have to our work. Pay differentials were installed for people working/living-in. Overtime costs were approved with little fanfare or the sort of scrutiny typical of ‘normal’ operations. A testing protocol was developed, a contract with a clinic in the region executed to test all staff prior to any contact with the folks we support, all at our cost. Personal Protective Equipment, about which organizations like mine knew very little prior to this crisis, was purchased at unimaginable scale from suppliers across the globe.
Fundraising campaigns were quickly cobbled together to plead for help. Looking under every rock for financial support through the likes of the Paycheck Protection Program, Appendix K, and the Provider Relief Fund became the singular focus of our finance and business office staff. Weekly communication platforms were created to keep our Board of Directors, folks we support and their families, and our broader community updated on the good, the bad and the sometimes really scary realities of our experience of the pandemic and to share critical information across our networks. New partnerships—odd ones against the context of what was once normal—were struck, collaboratives built.
We’ve saddled up with national and local associations and organizations to create networks of content experts, from virologists and primary care physicians and dentists, to public policy wonks, to researchers and academicians to inform the science and learn from the smartest and best-informed people we can find. Advocacy activities were undertaken, ranging from newspaper articles that decried the lack of testing and PPE resources available, for not just folks with IDD that my agency supports, but that all people with IDD need and, frankly, deserve, to letters and phone calls and e-mails to elected officials at the local, state and federal levels pleading for help.
Virtual supports were researched, built, implemented, and evolved in real time. Resources dedicated to the mental health needs of staff and people we support have been identified and deployed as what we’d hoped initially might be only a few months turned into what will likely be more than a year. Employee assistance program benefits were significantly enhanced and extended. Death and dying counseling and critical incident debriefing sessions were created and delivered. We created a Medical Advisory Panel to inform policy and protocol, to educate staff and people we support, to provide expertise and, frankly, counseling to our community. We published journal articles and white papers and guidelines so that the field was informed and provided information that might, if we were good and lucky and timely enough, to save lives. And all of this barely scratches the surface…
In Maryland, as of January 7, 2021, the case fatality rate of people with IDD is nearly 2.5 times the case fatality rate of the general population. In Virginia, it’s 3.0 times the rate of the general population. In Washington, DC, it’s 4.8X. The list goes on. In nine states and DC, the case fatality rate among people with IDD ranges from 1.4 to 4.8 times the rate of their peers in the general populations of those jurisdictions. The research that has emerged as to COVID-19 and its impact on people with IDD tells a terrible story and is a sobering warning to all of us who are any part of this field.
At my agency, we’ve only just begun to fully comprehend the lessons that have and will continue to come of our experience. We have collected mountains of data so that we can separate the metrics of our experiences over these last 10 months and those that lie in wait in front of us from the emotions and sheer exhaustion of them. My hope is that we learn the critical, essential lessons of the pandemic and how we navigated it. Questions must be asked – did we do the rights things at the right times for the right reasons? What was the impact of choices we made, and did means justify ends? Was our reaction and were our protocols over- or under-reach? Did we trample on our commitment to self-determination and meaningful choice for all humans but for the sake of protecting people, and if so, at what cost? Were we suitably proactive or dangerously reactive?
And, the one I can’t shake: Did we do enough?
It’s hard to know what the next days and weeks and months hold. Over the three days during which I’ve written this article, we have had nearly 100 of our staff receive the first doses of the vaccine (yes, we’ve written a Vaccination Protocol), and the people we support are scheduled for vaccination clinics beginning late January. We are, it would seem, closer to the light at the end of the tunnel. But until we’re there, we must continue to manage this crisis without precedent. We must continue to build the airplane as we fly it. There is still no playbook.
We are grizzled by the experiences of these past 10 months, and we remain committed to facing whatever is still to come with our eyes wide open. We are shattered by our loss of life, and we are inspired by their memories to fight forward. We are drained and exhausted, but we are energized by opportunities to learn and to grow. We wish to be done with COVID-19, to fully and finally talk about it in the past tense, but we remain alert and aware of the danger, singularly focused on surviving this crisis and thriving in its wake, wiser, even if a bit battered, for the experience.
ABOUT THE AUTHOR:
David A. Ervin, BSc, MA, FAAIDD is CEO of Jewish Foundation for Group Homes, a Maryland-based nonprofit supporting people with intellectual and developmental disabilities (IDD) in Maryland and Virginia. With more than 30 years in the field, David has extensive professional experience working in and/or consulting to organizations and governments in the US and abroad. He is a published author and speaks internationally on health and wellness and healthcare for people with IDD and other areas of expertise. David’s current research interests include cultural competence in healthcare delivery to people with IDD and the impact of integrating multiple systems of care. He was a contributing author to the Rubin, et al. seminal volume, Health Care for People with Intellectual and Developmental Disabilities across the Lifespan, and has co-authored several juried articles in 2019 and 2020 on health outcomes achieved by people with IDD through access to multidisciplinary healthcare models and, most recently, the impact of COVID-19 on people with IDD. David serves on a number of policy and practice committees, including the American Association on Intellectual and Developmental Disabilities/The Arc of the US Joint Committee on Long Term Services and Supports, and is on the Board of vaACCSES, a Virginia community service provider association.
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