People with IDD have been impacted by COVID-19 unlike any other community. Yes, we can be this unequivocal. Study after study tells a grim tale. Paraphrasing a commentary in the New England Journal of Medicine Catalyst entitled The Devastating Impact of COVID-19 on Individuals with Intellectual Disabilities in the United States (Gleason, et al., 2021), people with intellectual disabilities experience higher incidence of COVID-19 infection, higher rates of hospitalization and need for ICU, and higher rates of death due to COVID-19 infection than virtually any other cohort.
The commentary is appropriately titled – devastating impact. Research from 11 states and the District of Columbia show that fatalities from COVID-19 among people with IDD are as much as 8.6 times higher than death from the virus among people without IDD (Landes, Turk & Ervin, 2021). In another study, Landes and colleagues (2021) demonstrate disproportionately high COVID-19 case rate, case-fatality rate, and mortality rate among people with IDD being supported in New York City residential settings.
As people with IDD, their families and friends, and support providers reacted to these realities, we all began to wonder why. Why were people with IDD so disproportionately impacted by COVID-19? Surely, the mere presence of an IDD wasn’t the issue – it had to be more than that. But, what?
As early in the pandemic as July 2020, Turk, et al. (2020) published analyses of a large sample of people with IDD who contracted COVID-19. This study suggested that people with IDD have higher prevalence of comorbid risk factors (i.e., hypertension, heart disease, respiratory disease, and diabetes) often associated with poorer COVID-19 outcomes, including death. Many of us had, even then, come to understand the common conditions that, when combined with COVID-19, resulted in terrible outcomes. The Centers for Disease Control and Prevention (CDC) had issued alerts as to these conditions, including obesity, pulmonary disease and other forms of inflammation. As it happens, these are conditions that are quite common among people with IDD. In fact, these and other co-occurring, chronic health conditions, otherwise known as co-morbidities, are experienced by people with IDD at rates that are generally higher than by people without IDD. This reality has been long established in the scientific literature and long before the COVID-19 pandemic.
We also came to quickly understand the impact of the settings in which people with IDD live on the likelihood of contracting and experiencing severe outcomes from COVID-19. Put simply, people living in congregate environments – group homes, intermediate care facilities (ICFs) and skilled nursing facilities (SNFs), for example – were contracting the virus at rates that were higher than people with IDD who were living in their own homes or with their families. Especially stark is data from ICFs and SNFs in California, which shows a death rate among individuals with IDD that is as much as 8.6 times the general death rate of all Californians from COVID-19 (Landes, Turk & Ervin, 2021). These and other data like them pointed to congregate settings as a risk factor for contracting and experiencing poorer outcomes from the virus.
It’s worth repeating that the presence of an IDD on its own appears to have no relationship to rates of contracting or outcomes experienced from COVID-19. As outlined above, pre-existing conditions that people with IDD experience at higher rates of prevalence, and where and how a person lives are critical factors. Now that we know these are the things that have really mattered through the pandemic, we’re left to ponder what it all means for us going forward. In other words, so what?
We’d be forgiven for believing that a one-in-a-hundred-years pandemic can’t possibly happen again. We’d be forgiven for our want to resume our lives and the way we think about the world around us like we’ve always done. We are anxious to put this all behind us. But there are essential lessons the pandemic teaches us.
Situation is Worse When Combined with COVID-19
People with IDD experience poorer health status and poorer access to culturally competent and accessible primary and specialty health, behavioral health and dental care. We have known these things for decades, and they are primary drivers of the co-morbidities—easily treatable conditions, by the way—that, when combined with COVID-19, have resulted in such terrible outcomes for people with IDD. There are many reasons, all well enough documented, for these realities. Readers of Exceptional Parent Magazine will be all too familiar with them.
- People with IDD rely on Medicaid as their health insurance in huge numbers. Because Medicaid rates of reimbursement are poor, finding a provider to care for people with IDD is difficult. When care is available, it is often characterized by quick, infrequent encounters that preclude fully-informed diagnoses, review of treatment options, or a full understanding of social determinants of health. Adults with IDD particularly are rarely (and, we mean rarely!) covered by private health insurance.
- Healthcare providers are not being trained or prepared for providing care to people with IDD. There is no recognized specialty in developmental medicine (the adult equivalent to developmental or neurodevelopmental pediatrics), no board certification, and no medical school curriculum built particularly around adults with IDD. While a growing number of medical schools include exposure and some didactic, experiential care components that include adults with IDD, it remains a rarity.
- Health promotion and wellness care designed with, by, and for people with IDD, is hard to find and harder still to access. From physical activity and exercise resources to tobacco cessation materials, from heart healthy nutrition to weight loss programs – all essentially ubiquitous in communities of people without IDD – there is little to no accessible resources designed for communities of people with IDD.
Beyond healthcare resources accessible to people with IDD before the pandemic, the exclusion of people with IDD and the families, friends and professionals who support them has persisted during the pandemic. An April 2020 survey of nurses who identify as specialists in nursing for people with IDD showed a “startling absence of public health guidelines for people with IDD and an equally startling exclusion of nurses specializing in IDD from pandemic response and planning” (Desroches, et al., 2021). There were so many occasions of people with IDD sick with COVID-19 being denied access to the full array of medical care and hospital services that the US Department of Health and Human Services Office for Civil Rights issued a bulletin stating that “persons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative ‘worth’ based on the presence or absence of disabilities or age” (United States Department of Health and Human Services Office for Civil Rights, 2020).
Sabatello and colleagues (2020) put it this way: “With people with disabilities entering the COVID-19 pandemic worse off than their non-disabled peers in terms of risk factors for more severe outcomes, a broken healthcare system with a history of medical biases against people with disabilities, and an absence of consolidated disability-friendly guidelines for emergency preparedness, it is likely that people with disabilities are discounted, and as result, fairing comparatively worse than their non-disabled peers in the community”.
High Risk of Infection in Congregate Settings
We have also learned, during the course of the COVID-19 pandemic, that congregate settings are directly correlated with higher rates of infection and severe outcomes. As seemingly ever, though, the issues that define the relationship between the type of residential environment in which a person lives and their experience of COVID-19 are complex. In the early days of the pandemic, as it became clear that people in group living environments were more likely to be greater risk for COVID-19 infection and severe outcomes, there was a modest push to discontinue any congregate settings. While there’s a worthy debate over the wisdom of these residential options, there are larger issues that must be considered.
We know, for example, that people with IDD who are receiving formal, government-funded supports tend to need and want more intensive supports. Many people living in ICFs and SNFs have complex health conditions and support needs that make them substantially more vulnerable to COVID-19. That people with IDD in these settings experienced a case fatality rate more than four times (4x) the general population is not surprising, and is less likely to do with the setting in which they live and more to do with their complex health needs and proximal nature of their care.
With that said, there is little debate that in congregate settings, where social distancing is not always possible – and in which a greater number of unrelated people are living in close proximity, supported by direct support professionals (DSP) who are typically coming and going on a rotating shift-based staff model – risks of infection with COVID-19 have been, and remain higher than in more individualized residential options. Landes, et al. (2021) note that the number of people living in a residential setting is an important consideration, and that people with IDD living in group environments necessarily interact with their housemates and the staff who support them. The higher the number, the greater the frequency and proximity of interaction, and the greater the risk of contracting the virus. While this doesn’t make all group homes and other congregate living models bad, it does offer important lessons to which we must pay close attention.
Look to Make Lasting Change to Systems of Care AND Support
All of this must inform critical steps forward in public policy and, more generally, the ways we contemplate the quality of lives of people with IDD. There are things that we can and must do – from self-advocates to providers and practitioners, from friends and family to colleagues and co-workers. We all need to demonstrate both our ability to learn from the COVID-19 pandemic and our resolute commitment to making lasting change to systems of care and support that quite simply have failed people with IDD through the pandemic.
- As Constantino, et al. (2020) point out, there are few groups who are at greater risk for COVID-19 infection than people with IDD. The co-morbidities that combine with COVID-19 to result in severe outcomes are easily prevented. However, they are co-morbidities that need routine care through culturally competent and accessible healthcare. The American Academy of Developmental Medicine and Dentistry (AADMD) estimate Medicaid savings of as much as $7 billion if healthcare providers were appropriately trained to the health needs of people with IDD (www.aadmd.org/ncidm). Over the past 15 years, primary and specialty healthcare delivery systems, designed with and for people with IDD, have demonstrated efficacy, both in terms of improvement in health and cost savings (see Ervin, et al., 2014; Wilson, et al., 2020). Several projects deserve our attention, including the Westchester Institute for Human Development Medical Home (www.wihd.org/programs-services/adult-health-services) in New York, the Lee Specialty Clinic (www.leespecialtyclinic.com) in Kentucky, and the Developmental Disabilities Health Center (www.peakvista.org/location/developmental-disabilities-health-center-colorado-springs-co-80917) in Colorado. There are others, all of which offer models that can and must be replicated at some scale if we are to meaningfully address the lifelong health needs of people with IDD.
- Most healthcare practitioners have had no formal training or experience with people – adults particularly – with IDD during their formal education and training. The Alliance for Disability in Health Care Education (www.adhce.org) is a not-for-profit organization of medical school faculty, nursing school faculty, and other healthcare educators who are working to integrate disability-related content and experiences into healthcare training programs. Their Core Competencies on Disability for Health Care Education (Alliance for Disability in Health Care Education, 2019) provide a useful framework in developing healthcare providers who are in training. In addition, the National Curriculum Initiative in Developmental Medicine (www.aadmd.org/ncidm) offers a medical school curriculum framework to teach learners how to improve their clinical skills when treating patients who live with an IDD (Holder, 2016). These resources must continue to be utilized widely to support efforts to educate current and future healthcare practitioners, in order to improve access to culturally-competent primary and specialty healthcare.
- The debate over congregate living will continue. Many families that include a member with an IDD, faced with impending high school graduations and the uncertain future that tends to follow, must contemplate how, where and with whom that member will live. Is there a group home provider that is trustworthy? Is a host home (also called shared living in some places) a better model, where the person with the IDD lives not with their own family, but with a host home provider and, potentially, their family? Can and does the person want to live alone? Do they need less intensive supports in order to achieve what they seek to achieve? Or, is it preferred that the person with the IDD continue to live at home, even after they turn 21? These and countless other questions like them frame the frequently challenging process of determining, ultimately, where and with how many people the person with the IDD will ultimately live. There is no doubt that people living in group homes, ICFs and SNFs fared worse than their peers who lived alone or with families (Landes, Turk & Ervin, 2021). More than 681,000 adults with IDD living in congregate living environments, owing primarily to – unsurprisingly – money. Even now, in the 21st Century, the US federal government deems state funding for community-based services optional, while it requires that states fund institutional services. Even when in the community, supports are structured and financed in most States in such a way as to incentivize larger facilities that are home to more people.
- Among the more significant objectives of Health People 2030 is reducing the proportion of people with intellectual and developmental disabilities who live in institutional settings with seven or more people. Data as of 2017 show that 21.5% of adults with IDD continue to live in settings of seven or more. While that’s improvement from the 2015 baseline of 22.7%, we have a long way to go to have anyone with an IDD who would choose a smaller setting to actually have access to one. Continued advocacy is essential to expanding options in community living supports for people with IDD. The Arc of the US, with its partners including the American Association on Intellectual and Developmental Disabilities, makes a policy priority of providing incentives for states and local communities to expand access to individualized community living (American Association on Intellectual and Developmental Disabilities, 2016). Some number of years before becoming President, Joe Biden is quoted as saying the following: “Don’t tell me what you value, show me your budget, and I’ll tell you what you value.” To paraphrase, we need a whole new set of investments in community-based supports that actually allow for smaller, more individualized living environments – and, we need self-advocates, families, friends and professionals to demand nothing less from federal and state governments.
It seems more likely than not, especially in the face of increasing concerns over the Delta variant of COVID-19, that we are not yet out of the pandemic woods. And, it seems, if past is prologue, that people with IDD will continue to fare far worse from the pandemic than their neurotypically developing peers. It bears repeating: There is nothing about an intellectual or developmental disability that, on their own, predisposes people to either contracting or experiencing more severe outcomes from COVID-19. Instead, it appears the greatest risk factors are the very things that we can control. Health status matters. All of the chronic conditions that people with IDD tend to experience in disproportionally higher frequency than people without IDD (Hsieh, K. et al., 2012) can and must be addressed, if not for COVID-19, which has already done incredible damage to the community of people with IDD, then for the next infectious disease event that seems inevitable. People with IDD deserve access to culturally-competent healthcare, and we have an obligation to assure that our healthcare practitioners are trained to an appropriate standard of competence.
In addition, we can agree that, at the very least, people with IDD should have a range of options to support how they wish to live. It seems most of the rest of us do. And, most of us live with two or three or four others only when those others are our family members. Some folks with IDD will choose congregate living options with one or two or three people, while others will not. In any event, it should be the person’s choice, not driven by always-scarce funding.
None of these are new issues or new needs. These issues are age-old. But, if a reasonable definition of insanity is continuing to do the same thing while expecting different outcome, then we need to do something different to fully and finally create lasting change.
ABOUT THE AUTHOR:
David A Ervin, BSC, MA, FAAID is CEO of Jewish Foundation for Group Homes, a nonprofit supporting people with intellectual and developmental disabilities (IDD) in Maryland and Virginia. With more than 30 years in the field, Mr. Ervin has extensive professional experience working in and/or consulting to organizations and governments in the U.S. and abroad. He is a published author and speaks internationally on health, wellness and healthcare for people with IDD and other areas of expertise.
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