Supporting the Health Care Needs of People with Disabilities

Overview of Disability

29% of US adults experience disability

A disability refers to any physical or mental impairment that results in substantial activity limitations.

Disability is a complex concept with no single definition. How it is defined depends on the purpose, and different factors come into play depending on the context.

Models for Understanding Disability:

• The medical model:

  • Views disability as an impairment within an individual, focusing on diagnosis and treatment.

• The social model:

  • Defining disability based on environmental and societal barriers.

• The interactionist model:

  • Conceptualizes disability as the interaction between impairments and the environment.

Bar graph titled ‘Disability Prevalence by Type:’

For adults 18 years and older across the US

• Cognitive: 13.9%

• Hearing: 6.2%

• Mobility: 12.2%

• Vision: 5.5%

• Self-care: 3.6%

• Independent living: 7.7%

Learn how the prevalence of disability varies by demographics.

27% of US adults experience disability: Centers for Disease Control and Prevention, Disability and Health Data System, Location: United States, DC & Territories, Category: Disability Estimates, 2022

Disability definition: National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Disability and Health Overview, 2024

Different definitions: ADA National Network, How is Disability Defined in the Americans With Disabilities Act?, 2023

Models for understanding disability: Monika Mitra et al., Health Affairs, Advancing Health Equity And Reducing Health Disparities For People With Disabilities In The United States, 2022

Interactionist model: Matthias Forstner, Disabilities, Conceptual Models of Disability: The Development of the Consideration of Non-Biomedical Aspects, 2022

Disability by type: Centers for Disease Control and Prevention, Disability and Health Data System, Location: United States, DC & Territories, Category: Disability Estimates, 2022

Disability Rates Vary by Demographics

Line graph titled ‘Disability Prevalence by Age Group:'

• 18 - 44: 23.6%

• 45 - 64: 29.1%

• 65+: 43.9%

• People age with disability and also age into disability. An estimated 70% of adults over 65 develop significant long-term service and support needs before the end of their lives.

Bar graph titled ‘Disability Prevalence by Race and Ethnicity:’

• White: 27.4%

• Black: 30.6%

• Hispanic: 33.4%

• Asian: 18.1%

• Native Hawaiian or Other Pacific Islander: 31.6%

• American Indian and Alaska Native: 38.7%

• Other/Multirace: 38.7%

• The interaction between socioeconomic and demographic factors, such as poverty and education, contributes to these disparities.

'Income and Employment by Disability Status:'

• Grouped bar graph

People with Disabilities by Income Group

• <$15,000 - 16.5%

• $15,000 to <$25,000 - 19.7%

• $25,000 to <$35,000 - 19.5%

• $35,000 to <$50,000 - 16.2%

• $50,000+ - 28.2%

People Without anIdentified Disability by Income Group

• <$15,000 - 6.0%

• $15,000 to <$25,000 - 11.1%

• $25,000 to <$35,000 - 16.3%

• $35,000 to <$50,000 - 18.7%

• $50,000+ - 47.8%

• People with disabilities are 2x as likely to live in poverty. Disability is both a cause and a consequence of poverty.

Employment and Underemployment Challenges for People with Disabilities

Unemployment

• The unemployment rate for people with disabilities is about 2x that of those without an identified disability

  • 7.2% - People with disabilities

  • 3.5% - People without an identified disability

Part-Time Employment

• People with disabilities are nearly 2x as likely to be employed part-time.

• Workers with disabilities are also more likely to be employed in service jobs such as food services and health care support, which more commonly offer part-time positions.

Underemployment, which includes working part-time involuntarily, can impact various aspects of health and well-being.

Learn about the relationship between disability and health.

Disability prevalence by age group: Centers for Disease Control and Prevention, Disability and Health Data System, Category: Disability Estimates, Indicator: Age, 2022

Adults over 65 develop significant Long-Term Services and Supports needs: Office of the Assistant Secretary for Planning and Evaluation at the U.S. Department of Health and Human Services, Richard W. Johnson, and Urban Institute, What Is the Lifetime Risk of Needing and Receiving Long-Term Services and Supports?, 2019

Disability prevalence by race and ethnicity: Centers for Disease Control and Prevention, Disability and Health Data System, Category: Disability Estimates, Indicator: Race/Ethnicity, 2022

• NOTE: All racial groups refer to the non-Hispanic population, while the Hispanic group can be of any race.

Race, ethnicity, and socioeconomic/demographic factors: National Disability Institute, Financial Inequality: Disability, Race and Poverty in America, 2019

Disability prevalence by socioeconomic status: Centers for Disease Control and Prevention, Disability and Health Data System, Category: Demographics, Indicator: Income Level, 2022

Disability and poverty: National Disability Institute, Financial Inequality: Disability, Race and Poverty in America, 2019

Unemployment status comparison: US Bureau of Labor Statistics, Persons with a Disability: Labor Force Characteristics Summary - 2023, 2024

Part-time employment: Kennedy Andara, et al., Center for American Progress, Disabled Workers Saw Record Employment Gains in 2023, But Gaps Remain, 2024

Impact of underemployment: Lonnie Golden and Jaeseung Kim, Health Affairs Health Policy Brief, The Rise And Fall Of Underemployment: Implications For Workers' Health, 2023

Health Concerns for People with Disabilities

Health is equally important for people with and without disabilities. Many people with disabilities live healthy, active, and fulfilling lives, and disability itself is not synonymous with poor health.

However, 38% of people with disabilities self-reported fair or poor health, compared to 8% of people without an identified disability.

Grouped bar graph titled 'Higher Rates of Co-Occurring Health Conditions:'

• Depression

  • 43.6% of people with disabilities

  • 13.7% of people without an identified disability

• Stroke

  • 6.5% of people with disabilities

  • 1.6% of people without an identified disability

• Chronic obstructive pulmonary disease (COPD)

  • 12.8% of people with disabilities

  • 3.2% of people without an identified disability

• Diabetes

  • 16.6% of people with disabilities

  • 7.9% of people without an identified disability

Chronic conditions are often co-occurring and can lead to disability.

Disparities Designation: The National Institutes of Health recently designated people with disabilities as a population with health disparities. This designation aims to advance research that will build evidence on the needs of people with disabilities, the barriers they face, and effective interventions.

Long-COVID and Disability

• Long-COVID can be defined as a disability under the Americans with Disabilities Act (ADA).

• People with disabilities had higher rates of long-COVID.

• Long-COVID can result in disability.

Learn about the costs of care for people with disabilities.

Disability is not poor health: Monika Mitra et al., Health Affairs, Advancing Health Equity And Reducing Health Disparities For People With Disabilities In The United States, 2022

People with disabilities had higher rates of fair or poor self-rated health: Centers for Disease Control and Prevention, Disability and Health Data System, Category: Health Risks & Behaviors, General Health Conditions, Indicator: Fair or Poor Self-Rated Health, 2022

Higher rates of health conditions:

• Rates of depression by disability status: Centers for Disease Control and Prevention, Disability and Health Data System, Category: Mental & Emotional Health, Indicator: Ever Had Depression, 2021
• Rates of stroke by disability status: Centers for Disease Control and Prevention, Disability and Health Data System, Category: Chronic Conditions, Indicator: Ever Had a Stroke, 2022
• Rates of chronic obstructive pulmonary disease by disability status: Centers for Disease Control and Prevention, Disability and Health Data System, Category: Chronic Conditions, Indicator: Ever Had Chronic Obstructive Pulmonary Disease (COPD), 2022
• Rates of diabetes by disability status: Centers for Disease Control and Prevention, Disability and Health Data System, Category: Chronic Conditions, Indicator: Ever Had Diabetes, 2022

Comorbidity and impact on disability: Kathleen B Watson et al., Centers for Disease Control and Prevention, Morbidity and Mortality Weekly Report, Chronic Conditions Among Adults Aged 18─34 Years — United States, 2019, 2022

Disparities designation National Institutes of Health, U.S. Department of Health and Human Services, NIH Designates People with Disabilities as a Population with Health Disparities, 2023

Long COVID and Disability:

• Long COVID ADA designation: U.S. Department of Health and Human Services, Guidance on “Long COVID” as a Disability Under the ADA, Section 504, and Section 1557.”, 2021
• Rates of long-COVID: Alice Burns, KFF, As Recommendations for Isolation End, How Common is Long COVID?, 2024
• Long-COVID resulting in disability: Centers for Disease Control and Prevention, National Center for Immunization and Respiratory Diseases (NCIRD), Division of Viral Diseases, Long COVID Basics, 2024

Disability Health Care Costs

Pie charts titled ‘Disability care is making up an increasing portion of total national health spending:’

• 27% in 2003 to 36% in 2015

Semi-circle graph titled ‘Annual Health Care Expenditures Associated with Disability by Service Category ($billions):’

• Institutional - $291.9

• Inpatient - $175.4

• Prescription medication - $120.9

• Outpatient - $117.9

• Personal care services - $88.7

  • Includes services that assist with daily living (e.g. eating, bathing, meal preparation)

• Home health - $57.7

• Emergency department - $15.6

• Text along graph: Annual Total (2013–2015): $868 Billion

Expenditures for people with disabilities represent 54% of all Medicare expenditures and 72% of all Medicaid expenditures.

Bar graph titled ‘Annual Health Care Expenditures Per Person:’

• People with disabilities - $16,491

• People without an identified disability - $3,541

Learn about the barriers to health care for people with disabilities.

Disability care is making up an increasing portion of health spending: Olga A Khavjou et al., National Health Care Expenditures Associated With Disability, Medical Care, 2021

• NOTE: This study analyzed data from 2015. This calculation includes disability-associated health care expenditure estimates for noninstitutionalized adults with disabilities as well as institutionalized adults in institutions such as nursing homes and associated living facilities. Long-term service and support expenditures for home- and community-based personal care services are also included in the calculation and were obtained from the 2015 Medicaid expenditures.

Annual disability–associated health care expenditures by service category: Olga A Khavjou et al., National Health Care Expenditures Associated With Disability, Medical Care, 2020

Personal care: Priya Chidambaram and Alice Burns, Kaiser Family Foundation, 10 Things about Long-Term Services and Supports (LTSS), September 2022

Health care expenditure per person: Olga A Khavjou et al., National Health Care Expenditures Associated With Disability, Medical Care, 2021

Health Care Access Barriers for People with Disabilities

Barriers to accessing health care services can cause people with disabilities to delay or forgo health care, leading to poorer health outcomes.

Financial Burden

• People living with a disability are less likely to be able to see a doctor and more likely to report medical debt.

• Bar graph ‘Unable to See a Doctor Due to Cost in the Past 12 Months:’

  • 22.6% of people with disabilities

  • 8.0% of people without an identified disability

Negative Attitudes and Discrimination

• Structural Ableism: Denies people with disabilities access to social and health care resources and leads to health inequities. This can include discrimination and implicit and explicit biases towards people with disabilities.

• Stereotyping: Assuming that people with disabilities are unhealthy or that their quality of life is poor or not valued.

• Stigma and Discrimination: Perceiving disability as something that needs to be cured or assuming that behaviors and actions need to conform with social expectations.

• Impact on Health Care:

  • 41% of physicians are very confident about providing the same quality of care for people with disabilities.

  • 32% of adults with disabilities reported unfair treatment in health care settings, compared to 10% of adults without disabilities.

  • Diagnostic overshadowing, where health conditions and symptoms are misattributed to an underlying disability, can impact the timeliness and quality of care for people with disabilities.

Transportation and Physical Barriers

• Lack of Access to Transportation

• Inaccessible Care Delivery: Medical and diagnostic equipment that is not accessible.

• Architectural Barriers - Steps, curbs, and narrow doorways that prevent mobility into and around health care facilities.

Communication Barriers

• Lack of accommodations, such as sign language interpreters and closed captioning for people with hearing disabilities.

• No large-print, Braille, or screen-reader accessible versions of health care materials for people with vision impairments.

• The use of technical language, long sentences, and words with many syllables may be significant barriers to understanding for people with cognitive disabilities.

Policy and Program Barriers

• Policy barriers - Include a lack of enforcement or awareness of existing laws and regulations, such as not complying with the ADA.

• Program barriers - Limit the effective delivery of health care programs, such as inconvenient scheduling and insufficient time for medical exams

Workforce Shortages

• Longstanding shortages of direct care workers threaten the ability of people with disabilities to remain in their homes and communities.

• Pie chart accompanying text ‘95% of community-based providers of intellectual and developmental disability services experienced moderate or severe staffing shortages.’

• Bar graph titled ‘Rural counties are more likely to have no aging and disability service organizations.’

  • 21.0% - Rural Areas Nonadjacent to Metro Areas

  • 5.8% - Metro Areas

Learn about strategies to support the health of people with disabilities.

Impact of barriers on care: Michael Karpman, et al., Urban Institute, Barriers to Accessing Medical Equipment and Other Health Services and Supports within Households of Adults with Disabilities, 2024

Financial Burden:

• Unable to see a doctor in the past year due to costs: Centers for Disease Control and Prevention, Disability and Health Data System, Category: Barriers & Cost of Health Care, Indicator: Could Not See a Doctor Due to Costs in the Past 12 Months, 2021
• Disability and debt: Rakshit, Shameek et al., Peterson-KFF Health System Tracker, The Burden of Medical Debt in the United States, 2024

Negative Attitude and Discrimination:

• Structural ableism: Dielle J. Lundberg et al., The Lancet Regional Health – Americas, Structural ableism in public health and healthcare: a definition and conceptual framework, 2023
• Stereotype, stigma, and discrimination: Centers for Disease Control and Prevention, Disability and Health Promotion, Disability Barriers to Inclusion, 2024
• Physician confidence: Lisa I. Iezzoni, Health Affairs, Physicians; Perceptions of People With Disability And Their Health Care, 2022
• Unfair treatment: Dulce Gonzalez, et al., Urban Institute, Four in Ten Adults with Disabilities Experienced Unfair Treatment in Health Care Settings, at Work, or When Applying for Public Benefits in 2022, 2023
• Diagnostic overshadowing: Agaronnik ND, El-Jawahri A, Iezzoni LI. J Gen Intern Med. Perspectives of Patients with Pre-existing Mobility Disability on the Process of Diagnosing Their Cancer, 2021

Transportation and physical barriers: Centers for Disease Control and Prevention, Disability and Health Promotion, Disability Barriers to Inclusion, 2024

Communication barriers: Centers for Disease Control and Prevention, Disability and Health Promotion, Disability Barriers to Inclusion, 2024

Policy and programming barriers: Centers for Disease Control and Prevention, Disability and Health Promotion, Disability Barriers to Inclusion, 2024

Workforce:

• Shortage of direct care workers: Barbara Lyons, Molly O’Malley Watts, The Commonwealth Fund, Addressing the Shortage of Direct Care Workers: Insights from Seven States, 2023
• Intellectual and developmental disabilities workforce shortages: American Network of Community Options and Resources, The State of America’s Direct Support Workforce Crisis, 2023
• Rural shortages: Claire Pendergrast and Danielle Rhubart, Lerner Center for Public Health Promotion, Penn State Population Research Institute, Aging and Disability Services are Unequally Distributed Across the United States, 2022

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

People with disabilities should benefit from all of the same health, well-being, and community engagement opportunities available to everyone.

Community Integration

• Make health care services available to people with disabilities in their homes and communities, not institutional settings.

  • Make it possible for people with disabilities to interact with people of their choice in the most inclusive environments possible.

• Ensure equal opportunities for work, socialization, and other activities within the broader community.

Public Health Promotion

• Utilize prevention efforts to prevent disease and support the health and wellness of people with disabilities. Such as:

  • Tailored education and counseling programs that promote physical well-being, improve nutrition, and encourage annual screenings using plain language and accessible materials.

Data and Research

• Improve disability data collection by designating it as a core demographic element.

• Further research of health disparities for people with disabilities to inform interventions.

• Partner with the disability community on research and data collection.

Build Capacity within the Health Care System

• Workforce Development

  • Train health care providers in disability awareness, inclusion, person-centeredness, and cultural competency with involvement from people with disabilities.

• Improve Accessibility of Health Care Facilities

  • Recognize and understand barriers for people with disabilities at every point of a health care visit to prioritize solutions, inclusion, and improve compliance.

Improve Inclusion

• Reduce Bias

  • Ensure nondiscrimination and eliminate the stereotype that people with disabilities are unhealthy and unworthy.

• Policy and Legislation

  • Leverage existing federal laws and policies to reduce barriers to health care and community and improve disability data.

• Universal Design

  • Make health care services usable and accessible to everyone through simple and intuitive design.

• Reasonable Accommodations

  • Modify existing health care processes and physical environments to increase access and participation of people with disabilities.

• Involve People with Disabilities

  • Prioritize input from people with disabilities throughout all aspects of programming and research.

Community integration: US Department of Justice, Civil Rights Division, Community Integration

Public health promotion:

• Prevention efforts Centers for Disease Control and Prevention, Disability Inclusion in Programs & Activities, 2020
• Plain language: Centers for Disease Control and Prevention, Health Literacy, Plain Language Materials & Resources, 2023

Data and research:

• Data: Bonnielin K. Swenor, B, Health Affairs Forefront, A Need For Disability Data Justice, 2022
• Research: National Cancer Institute, Bowers J, Brick R, Inclusion of People with Disabilities in Research, 2023

Build capacity within the health care system

• Workforce development: Danbi Lee, Medical Education Online, Disability competency training in medical education, 2022
• Involve people with disabilities: Rotenberg S, et al., Disability and Health Journal, Disability training for health workers: A global evidence synthesis, 2022
• Accessibility in health care facilities: Centers for Medicare & Medicaid Services, How to improve physical accessibility at your health care facility, 2022

Improve inclusion:

• Reduce bias: Centers for Disease Control and Prevention, Disability and Health Inclusion Strategies, 2020
• Universal design: Centers for Disease Control and Prevention, Disability and Health Inclusion Strategies, 2020
• Policy and legislation: Elizabeth Pendo et al., Department of Health and Human Services, Office of Disease Prevention and Health Promotion, The Role of Law and Policy in Achieving Healthy People’s Disability and Health Goals around Access to Health Care, Activities Promoting Health and Wellness, Independent Living and Participation, and Collecting Data in the United States.; 2020
• Reasonable accommodations: Centers for Disease Control and Prevention, Disability and Health Inclusion Strategies, 2020
• Involve people with disabilities: Centers for Disease Control and Prevention, Disability and Health Inclusion Strategies, 2020