Disability, Health Equity & COVID-19

Disability in the United States

1 in 4 adults in the United States has a disability

What is a disability?

• A disability occurs when a person’s body, mind and/or emotional functions intersect with a physical or social environment that results in a limitation in activities or restrictions in full participation for the person.

The following chart uses CDC data to outline disability status of U.S. adults. It shows that

• 12.0% of adults have a Cognitive Disability
• 5.9% of adults have a Hearing Disability
• 12.8% of adults have a Mobility Disability
• 5.0% of adults have a Vision Disability
• 3.8% of adults have a Self-care Disability
• 7.0% of adults have an Independent Living Disability
  

People with disabilities are a diverse group of individuals with a wide-range of healthcare and support needs.

1 in 4 adults has a disability: Okoro CA, Hollis ND, Cyrus AC, Griffin-Blake S. Prevalence of Disabilities and Health Care Access by Disability Status and Type Among Adults — United States, 2016. MMWR Morbidity and Mortality Weekly Report 2018;67:882–887.

Disability definition: Paraphrased from Centers for Disease Control and Prevention, Disability & Health Overview.

Types of disabilities: Centers for Disease Control and Prevention, Disability and Health Data System (DHDS), Disability Estimates (2019).

• NOTE: CDC definitions

The Relationship Between Disability and Health

People with disabilities are more likely to report poorer health:

40.9% of people with a disability report fair or poor self-rated health compared to 9.1% of people without a disability.

Individuals with disabilities have experienced poorer health when compared to those without disabilities:

• 15.8% of people with a disability have had diabetes compared to 7.2% of those without a disability

• 6.6% of people with a disability have had a stroke compared to 1.5% of those without a disability

• 13.2% of people with a disability have had COPD compared with 3.1% of those without a disability

• 9.0% of people with a disability have had cancer, compared with 5.3% of those without a disability

• 42.0% of those with a disability have had depression, compared to 11.6% of those without a disability

New guidance from the Biden Administration says that long COVID can be considered a disability under civil rights law, if it substantially limits one or more major life activities

Reported poorer health: Centers for Disease Control and Prevention, Disability and Health Data System (DHDS), General Health Conditions (2018)

Poorer health outcomes bar chart: Centers for Disease Control and Prevention, Disability and Health Data System (DHDS), Chronic Conditions (2018) and Mental & Emotional Health (2019)

Long-COVID: Guidance on “Long COVID” as a Disability Under the ADA, Section 504, and Section 1557, U.S. Department of Health and Human Services

Common Barriers to Disability Inclusion and Participation

The World Health Organization (WHO) describes barriers as factors in a person’s environment that, through their absence or presence, limit functioning and create disability

Common barriers to the inclusion and integration of people with disabilities:

• Attitudinal: Ableism, stereotyping, stigma, prejudice, and discrimination

• Communication: Experienced by people who have disabilities that affect hearing, speaking, reading, writing, and or understanding

• Physical: Obstacles that prevent access or block mobility, such as curbs and steps

• Policy: Lack of enforcement or awareness of existing laws and regulations, e.g., the Americans with Disabilities Act (ADA)

• Programmatic: Factors that limit the effective delivery of a public health or healthcare programs, such as inconvenient scheduling and poor communication with patients

• Transportation: Lack of adequate and accessible transportation, which can interfere with a person’s independence and participation

• Social Drivers of Health: Social determinants of health, including lack of affordable and accessible housing, and lower rates of employment, education and income

This graphic shows that the employment rate for people with a disability is 43.6% compared to 66.4% for those without a disability. 19.7% of people with a disability have an income under $15,000 compared to 6.6% of people without a disability.

WHO definition: World Health Organization, International classification of functioning, disability and health. Geneva:2001, WHO. p. 214.

• NOTE: Sourced from CDC webpage

Common barriers: Centers for Disease Control and Prevention, Disability and Health Promotion, Common Barriers to Participation Experienced by People with Disabilities

Employment & Income statistics: Centers for Disease Control and Prevention, Disability and Health Data System (DHDS), Demographics (2019)

Health Care Access Challenges

People with disabilities have less access to adequate health care due to factors such as:

Costs

• 26.7% of people with a disability could not see a doctor due to cost in the past 12 months compared to 10.1% of people without a disability

Health care provider stereotypes about disabilities

• 82.4% of U.S. physicians reported that people with significant disability have worse quality of life than nondisabled people

• Only 56.5% strongly agreed that they welcomed patients with disability into their practice

Lack of appropriate provider training

• Only 40.7% of physicians were very confident about their ability to provide the same quality of care to patients with a disability

Lack of accessible medical facilities and equipment

• Exam tables and chairs may not be adjustable

• Scales may fail to accommodate wheelchairs or require a step up

• People with visual disabilities or intellectual/developmental disabilities may not be able to access patient portals

Communication barriers

• Care after a medical visit may be hindered by materials that are not available in plain language or braille

• Lack of accommodations, such as sign language interpreters

Health care costs: Centers for Disease Control and Prevention, Disability and Health Data System (DHDS), Barriers & Costs of Health Care (2019)

Health care provider stereotypes: Iezzoni LI, Rao SR, Ressalam J, Bolcic-Jankovic D, Agaronnik ND, Donelan K, Lagu T, Campbell EG. Physicians’ Perceptions Of People With Disability And Their Health Care. Health Affairs (2021)

Lack of appropriate training: Iezzoni LI, Rao SR, Ressalam J, Bolcic-Jankovic D, Agaronnik ND, Donelan K, Lagu T, Campbell EG. Physicians’ Perceptions Of People With Disability And Their Health Care. Health Affairs (2021)

Lack of accessible medical facilities & examination: Enforceable Accessible Medical Equipment Standards: A Necessary Means to Address the Health Care Needs of People with Mobility Disabilities, National Council on Disability

Communication Barriers: Section 1557: Ensuring Effective Communication with and Accessibility for Individuals with Disabilities, U.S. Department of Health and Human Services

COVID-19 Disproportionately Impacted People with Disabilities

Risk of Poor Outcomes from COVID-19:

• Individuals with intellectual and developmental disabilities are at a higher risk of dying from COVID-19 than those without such disabilities

• Those with intellectual disabilities were 6x more likely to die from COVID-19 than other members of the population

• Psychological Distress: Activity restrictions can induce mental health stress - especially among those on the autism spectrum

Reduced access to routine health care and rehabilitation:

• For some, telehealth provided opportunities to access care, for others, it posed additional challenges:

  • Blind/low vision: screen reader tools were not necessarily compatible

  • Cognitive disabilities: tools may be difficult to navigate

  • Deaf/hard of hearing: ASL interpreters or closed captioning unavailable

Caregivers

• Individuals have experienced disrupted access to caregivers

• Lack of resources available to support family caregivers

Interventions

• Many interventions, including mental health & school-based, were not implemented due to reduced in-person work

Adverse social impacts:

Unemployment:

• By August 2020, one million U.S. workers with disabilities had lost their jobs, impacting:

• 1 in 5 workers with a disability compared to 1 in 7 workers in the general population

Unmet Needs:

• For some, the pandemic impacted transportation options and reduced access to medications, food and other basic necessities

• Home and community-based service providers did not receive the level of federal pandemic assistance made available to other health care providers, and at least half of states saw permanent closure of HCBS providers

Three factors impacting people with disabilities: Shakespeare T, Ndagire F, Seketi QE. Triple jeopardy: disabled people and the COVID-19 pandemic. The Lancet. March 16, 2021

Intellectual disabilities risk: Gleason J, Ross W, Fossi A, Blonsky H, Tobias J, Stephens M. The Devastating Impact of Covid-19 on Individuals with Intellectual Disabilities in the United States. NEJM Catalyst Innovations in Care Delivery. March 5, 2021.

Psychological Distress: Courtenay K, Perera B. COVID-19 and people with intellectual disability: impacts of a pandemic. Ir J Psychol Med. 2020.

Telehealth: Young D, Edwards E. Telehealth and Disability: Challenges and Opportunities for Care, National Health Law Program

Caregivers: “People With Disabilities Find The Coronavirus Has Cut Them Off From Their Caregivers,” NPR, June 16, 2020

Interventions: Courtenay K, Perera B. COVID-19 and people with intellectual disability: impacts of a pandemic. Ir J Psychol Med. 2020.

Unemployment: A Million People with Disabilities Have Lost Jobs During the Pandemic, SHRM, reporting data from Bureau of Labor Statistics (BLS) Jobs Report.

Unmet Needs: Epstein S, Campanile J, Cerilli C, Gajwani P, Varadaraj V, Swenor BK, New obstacles and widening gaps: A qualitative study of the effects of the COVID-19 pandemic on U.S. adults with disabilities, Disability and Health Journal, July 2021.

Home & community-based service providers: Funding for Health Care Providers During the Pandemic: An Update, Kaiser Family Foundation

Disparities in the COVID-19 Response Experienced by People with Disabilities

Lack of data

• Who counts depends on who is counted

• Estimates of COVID-19 cases and deaths primarily come from nursing homes, reflecting just a fraction of the population with disabilities

• Data collection is a fundamental pillar of public health and lack of information perpetuates social injustice

• Inaccurate data on COVID-19 and vaccine rates can misguide public health approaches

Inaccessible testing and vaccination

• For some people who cannot drive due to a disability, drive-through testing created accessibility challenges

• Vaccine registration websites violated disability rights laws, creating inequity for people with disabilities

• States and territories varied in vaccine prioritization for the disability community

• Vaccination sites lacked accessibility and accommodations

Obstacles to accessing information on pandemic

• Lack of captions or alternative text

• Difficult to find information relevant to variety of conditions

• Overwhelming and confusing information

Return to Pre-Pandemic Life

• The pandemic altered accessibility

  • Such as through work from home accommodations and grocery delivery

• There is concern that returning to pre pandemic norms will exclude people with disabilities

Lack of Data: Reed, Nicholas S, et al. “Disability and COVID-19: Who Counts Depends on Who Is Counted.” The Lancet Public Health, vol. 5, no. 8, 21 July 2020, doi:10.1016/s2468-2667(20)30161-4.

Dearth of disability-related Covid-19 data: Bonnielin Swenor, “Lack of disability-related Covid-19 Data Can Confound Responses.” STAT, 11 June 2020.

COVID-19 testing and vaccination inaccessible to many:

• COVID-19 vaccination registration websites: Lauren Weber, Hannah Recht. “Covid Vaccine Websites Violate Disability Laws, Create Inequity for the Blind.” Kaiser Health News, 25 Feb. 2021.

  • NOTE: People who use special software to make the web accessible were unable to sign up for the vaccines because government websites lacked accessibility features.

• States and territories varied in vaccine prioritization: Epstein, Sabrina, et al. “Covid-19 Vaccine Prioritisation for People with Disabilities.” The Lancet Public Health, Elsevier, 21 Apr. 2021.

• Vaccine Prioritization Dashboard: Created as a partnership between the Johns Hopkins Disability Health Research Center and the Center for Dignity in Healthcare for People with Disabilities

• Drive-through testing: Epstein, Sabrina, et al. “New Obstacles and Widening Gaps: A Qualitative Study of the Effects of the COVID-19 Pandemic on U.S. Adults with Disabilities.” Disability and Health Journal, Elsevier, 30 Mar. 2021.

  • NOTE: COVID-19 Testing Considerations for People with Disabilities, FEMA, July 17, 2020.

• Obstacles to getting information on the pandemic: Epstein, Sabrina, et al. “New Obstacles and Widening Gaps: A Qualitative Study of the Effects of the COVID-19 Pandemic on U.S. Adults with Disabilities.” Disability and Health Journal, Elsevier, 30 Mar. 2021.

• Inaccessible vaccine sites: Swenor, Bonnielin.COVID-19 & Disability: An unequal response. Jun. 2021. PowerPoint Presentation.

The pandemic altered accessibility: Epstein, Sabrina, et al. “New Obstacles and Widening Gaps: A Qualitative Study of the Effects of the COVID-19 Pandemic on U.S. Adults with Disabilities.” Disability and Health Journal, Elsevier, 30 Mar. 2021.

Return to Normal: Small, Jessalyn. “Will a Return to 'Normal' Shut out People with Disabilities?” Center for Health Journalism, April 22, 2021.

Vaccine Prioritization Dashboard: Created as a partnership between the Johns Hopkins Disability Health Research Center and the Center for Dignity in Healthcare for People with Disabilities

Strategies to Support the Health and Well-being of People with Disabilities

Partner with the disability community

• Disability research should engage and include people with disabilities in the planning and decision-making process, ensuring focus on the most pressing issues

Collect disability data

• Data should include race, gender, language and other cultural factors

• Also collect qualitative data

Prioritize accessibility

• professionals need to ensure all people receive equal access to accurate information and quality services

Include disability in all health equity efforts

• Health equity research and policy must be holistic, intersectional, and include disability

Improve representation and leadership

• Support the disability rights movement’s call for ‘Nothing About Us Without Us’

Address stigma through medical training

• Include disability cultural competency curricula in all health care processional schools

Promote disability employment

• Connect job seekers with disabilities to employment opportunities

• Create inclusive and accessible workplaces

Support social participation

• Include people with disabilities in everyday activities

• Identify and remove barriers for meaningful participation based on the individual’s interests

Partner with the disability community: Swenor, Bonnielin. COVID-19 & Disability: An unequal response. Jun. 2021. PowerPoint Presentation.

Collect disability data

• Swenor, Bonnielin. COVID-19 & Disability: An unequal response. Jun. 2021. PowerPoint Presentation.

• Goode, Tawara. Multiple Perspectives on the Impact of COVID-19
  on Persons with Disabilities: Lived Experience, Data, and Policy. Jun. 2021. PowerPoint Presentation.

Prioritize accessibility: “Disability and Health Information for Healthcare Providers.” Centers for Disease Control and Prevention, 15 Sept. 2020.

Include disability in all health equity efforts: Swenor, Bonnielin K. “Including Disability in All Health Equity Efforts: An Urgent Call to Action.” The Lancet Public Health, Elsevier, 26 May 2021.

Improve representation and leadership: Wolff, Eli A., and Dr. Mary Hums. “‘Nothing about Us without Us’ -- Mantra for a Movement.” HuffPost, HuffPost, 6 Sept. 2017.

Addressing stigma: “Disability and Health Inclusion Strategies.” Centers for Disease Control and Prevention, 15 Sept. 2020.

Improving medical training: Gallegos, Andrés J. “Misperceptions of People with Disabilities Lead to Low-Quality Care: How Policy Makers Can Counter the Harm and Injustice: Health Affairs Blog.” Health Affairs, 1 Apr. 2021.

Promoting disability employment: “Promoting Disability Employment in Covid-19 Recovery Strategies.” National Governors Association, 30 Mar. 2021.

Support social participation: “Disability and Health Inclusion Strategies.” Centers for Disease Control and Prevention, 15 Sept. 2020.