Feature Issue on Crisis Management for People with Intellectual, Developmental, and Other Disabilities

Since its onset in 2020, the COVID-19 pandemic has had a deleterious impact on the health and well-being of all populations that reside in the United States, its territories, and tribal nations. National data collected thus far demonstrate that the pandemic has disproportionate impact on low-income communities and age cohorts, and among specific racial and ethnic groups.

American Indians or Alaska Natives (AI/AN). In studies, the Centers for Disease Control and Prevention reported that in 23 states, the overall COVID-19 incidence among AI/AN persons was 3.5 times greater than among white persons (Hatcher et al., 2020). Mortality rates among the AI/AN population in 14 participating states were disproportionately affected by the COVID-19 pandemic, especially among younger age groups. The COVID-19 mortality rates among AI/AN of persons aged 20–29 years, 30–39 years, and 40–49 years, were 10.5, 11.6, and 8.2 times greater, respectively, than among white persons (Arrazola et al., 2020).

Blacks or African Americans. The infection rate for Blacks or African Americans (AA) is 62 per 10,000, compared with 23 per 10,000 for whites (National Urban League, 2020). Nationally, Black or AA people have died at 1.4 times the rate of white individuals and, as of March 7, 2021, a total of 73,462 Black/AA lives have been lost to COVID-19 (COVID Tracking Project, 2021). These deaths account for 15% of all COVID-19 deaths when race is known. Also, as of March 7, 2021, Black/AA populations in Washington, D.C. are 46% of the total population, 49% of COVID-19 cases and 76% of deaths. (Covid Tracking Project, 2021).

Excerpts from a Collection of Lived Experiences of Persons with Intellectual, Developmental, and Other Disabilities

Services and Supports	Select Experiences
Availability | the array, types, and intensity of supports and services	“I was not able to receive regular medical care, including my pain injections, and I could not get needed supplies and groceries.” “Before the COVID-19 crisis, I received personal support services from a direct support professional…five days a week from 8 a.m. to 4 p.m. I haven’t received services lately, except for 4-6 hours once every two weeks.”
Accessibility | geographic distribution, hours of delivery, accommodations, and universal design	“I lacked home health care due to transportation issues – staff could not get to me. I was denied use of elevator in grocery store, I think because people were afraid to be with me in an enclose space, even with a mask.”
Acceptability | capacity to plan and deliver supports and services in a manner That is culturally and linguistically competent and person/ family-centered	“The agency refused to let the DSP split her shift to before and after school hours in order to care for her children and also support me due to concerns about liability.”
Quality | varies depending on the person and family and other factors, such as race, ethnicity, languages spoken, gender, gender identity, sexual orientation, income, and place	“While waiting in the ER, I developed sepsis. Was sent home a few days later without treatment for the kidney stone and without in-home supports.”
Utilization | the rate of use by persons, families, and populations that reside in the United States, U.S. territories, and tribal nations	All persons interviewed reported disparities in rates of use of supports and services that included but were not limited to disruptions in health and medical care, in-home supports, physical and other therapies, public transportation, employment (days worked), performing independent activities of daily living, and facility-based services and closures.

SOURCE: Georgetown University National Center for Cultural Competence

Latinos/Hispanics. The infection rate for Latinos/Hispanics exceeds all other racial/ethnic minority groups nationally — and their hospitalization rate is 3.2 times the rate among whites (Salud America, 2021). A CDC study cited that among 79 counties in 22 states, Hispanic/Latino persons were the largest group by population size (3.5 million persons) living in counties where a disproportionate number of cases among that group was identified (Moore et al., 2020). According to the CDC, as of Feb. 11, 2021, a total of 18.1% of COVID-19 deaths in the United States are among Latinos/Hispanics. When the CDC used weighted population distributions, it changed the death rate to 33.4% for this ethnic group. (CDC, 2021).

The impact of COVID-19 at the intersection of disability, race, and ethnicity

A review of selected and recently published literature indicates disproportionate COVID-19 morbidity and mortality among people with disabilities due to underlying health conditions. This population is also experiencing delayed and poorer quality of health and mental health care, discrimination and biases by health care professionals and institutions, increased isolation, job loss, and disruption in supports and services. (Sabatello et al., 2020). This literature cites extensive deficits in the nation’s current data collection systems, including the failure to examine COVID-19 related data by disability, race, and ethnicity. Sabatello et al. state there is a need for accuracy in data collection in order to better understand COVID-19 disparities and improve prevention and treatment of, and preparedness for, current and future infectious disease pandemics among people with disabilities. If we do not collect, analyze, and report data that is inclusive of race, ethnicity, primary language spoken, gender, gender identity, socioeconomic status, and other cultural factors, we miss the opportunity to improve prevention, treatment, and other services for all persons with disabilities in future public health emergencies.

Collecting Data on the Lived Experience of Persons with Developmental and Other Disabilities in DC

The previously presented national statistics are compelling in illustrating the disproportionate effects of the pandemic. Yet they tell us very little about the person. A public health advocate and pioneer of occupational health researcher stated famously that “Statistics are people with the tears wiped away.” (ADAO, 2015). During the early stages of the pandemic, the Georgetown University Center for Excellence in Developmental Disabilities went about the task of talking with persons with disabilities, listening carefully to their stories, and documenting these stories as personal narratives. These narratives capture the stories before statistics wipe the tears away, helping us better understand the socio-cultural contexts of their lives during COVID-19.

Between April and May 2020, GUCEDD faculty interviewed 11 persons with intellectual, developmental, and other disabilities from diverse racial and ethnic backgrounds who reside in the District of Columbia. The interviews consisted of asking four basic questions about their lives during the pandemic, recording the answers, sending draft narratives via email, or reading them during telephone calls, and making revisions as requested. Some required multiple interviews to convey adequately their experiences and tell their stories. GUCEDD faculty submitted several of these to the Administration Community for Living, U.S. Department of Health and Human Services, to provide real-time, first person narratives about the impact of the COVID-19 pandemic.

GUCEDD faculty used “A Disparities Framework: Intellectual and Developmental Disabilities Services and Supports,” created by the Georgetown University National Center for Cultural Competence, to analyze these stories in the pandemic context. (Goode, n.d).

The NCCC framework includes analysis of supports and services identified in the Developmental Disabilities Assistance and Bill of Rights Act of 2000 – health, housing, childcare, recreation, employment, education, early intervention, and transportation. It asks the question, Are there disparities in the availability, accessibility, acceptability, quality, and utilization of supports and services among unserved and underserved segments of the population of people with IDD? The DD Act defines these populations as “individuals from racial and ethnic minority backgrounds, disadvantaged individuals, individuals with limited English proficiency, individuals from underserved geographic areas…and other specific groups within this population, including those requiring assistive technology to participate in and contribute to community life.” (Developmental Disabilities Assistance and Bill of Rights Act, 2000). Emerging evidence suggests individuals from these populations experience even greater disparities in access to and quality of services and supports across the lifespan.  

Using the framework categories, the stories revealed that the 11 persons with intellectual, developmental, and other disabilities interviewed experienced disparities in accessibility (9 of 11), availability (8 of 11), acceptability (1 of 11), and quality (1 of 11) of supports and services. Each of them experienced disruptions in utilization due to the widespread impact of the pandemic, resulting in significant limitations in major aspects of their lives. All persons who were interviewed reported disparities in supports and services that included but were not limited to health and medical care, in-home supports, physical and other therapies, public transportation, employment (days worked), performing independent activities of daily living, and facility-based services and closures. Additionally, access to and the capacity to use technologies (e.g., internet, computers, tablets, mobile phones) were reported as having a significant impact because it was the primary means of conveying information to the public. The complete framework, including the excerpts in the accompanying chart, provides powerful quotes that describe the lived experiences of the persons who were interviewed. These stories illustrated the unique experiences of persons with intellectual and developmental disabilities as they strived to maintain their participation in community life during the pandemic.

Conclusion

Since the onset of the pandemic, and as of March 6, 2021, there have been 409 positive cases and 52 deaths among people with intellectual and developmental disabilities in the District of Columbia — a significant disparity when compared to those without disabilities (Government of D.C. 2021). The morbidity and mortality of the COVID-19 pandemic among persons with intellectual and developmental disabilities in the District of Columbia have been disproportionately born by African Americans.

More than one year into this pandemic, we do not know when it will be safe to resume some semblance of our former ways of life. It is essential that our knowledge about the impact of COVID-19 not be limited to quantitative data. We have an obligation to collect qualitative data on a continuous basis which provide in-depth insight and valuable information about the lived experience of people with intellectual, developmental, and other disabilities in order to inform needed supports and services. While this article describes a small sample of adults, it is highly likely that their experiences are mirrored across the diverse population of persons with intellectual, developmental, and other disabilities in the District of Columbia. We are compelled to emphasize these interviews revealed fear, vulnerability, anxiety, frustration, and isolation. These emotions signal the need for mental health supports that are available, accessible, acceptable, and of high quality, and which can be fully utilized by persons with intellectual and developmental disabilities. Data such as this vividly illustrates the lived experiences of persons with intellectual and developmental disabilities, and can better equip us to support their interests and needs in public health crises.

GUCEDD faculty who wrote this article are grateful to the following people who shared their stories with us and gave their consent for publication:

James Beadle, Heidi Case, Jen Deerinwater, Thelma Green, Kara Jones, Robert Kennedy, Thomas Mangrum, Germaine Payne, Steven Powe, Victor Robinson, and one participant who asked not to be named publicly.

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