Author: Angel L. Miles, PhD
*This is the third blog in a series about the Illinois Healthcare Affordability and Feasibility Study mandated by the Illinois Healthcare Affordability Act. Previous blog posts in the series can be found here and here.
By prohibiting discrimination of people with pre-existing conditions, the Affordable Care Act (ACA) expanded medical coverage for people with disabilities throughout the nation who were previously uninsured or underinsured. In spite of these strides towards ensuring all Americans have adequate health care coverage, significant gaps in insurance coverage and quality of care remain. The upcoming release of the Healthcare Affordability Feasibility Study conducted by the Illinois Department of Healthcare and Family Services and the Department of Insurance will provide some opportunities to improve access to affordable coverage. Protect Our Care Illinois (POCIL) firmly believes state lawmakers and administrators must use the ideas generated from the study to expand affordable coverage. Furthermore, any improvements in health care coverage must prioritize the needs of people with disabilities given the disparities that exist in coverage for this community.
According to an IDPH report, disabled adults make up one of the largest and most diverse groups in Illinois, representing 22 percent of the population. Although people with disabilities are far more likely to have medical insurance coverage and higher rates of health care utilization than people without disabilities, they face significant barriers to receiving quality, affordable and accessible care. Nearly 21 percent of Illinoisans with disabilities reported avoiding visits to the doctor because of cost compared to 10 percent of those without disabilities. Furthermore, the Center for Medicaid and Medicare Services (CMS) found that adults with disabilities are almost twice as likely as nondisabled adults to report unmet health care needs due to problems with accessibility. A different study from the Urban Institute and Robert Wood Johnson Foundation similarly reported that compared to nondisabled adults, adults with disabilities are about three times more likely to report unmet health care needs because a medical provider would not accept their medical insurance compared to other insured adults without a reported disability. Clearly, people with disabilities are a health disparities population.
Adults with disabilities have higher rates of unemployment, underemployment and poverty. In the state of Illinois specifically, 26 percent of working age people with a disability live below the poverty line, compared to approximately 12 percent of working age people without a disability and just 35 percent of Illinoisans with disabilities are employed compared to 76 percent of people without disabilities.
Despite this economic disadvantage, people with disabilities tend to have more out-of-pocket health care costs than people without disabilities. One study found that compared to their nondisabled counterparts adults with disabilities fill more than five times as many prescription drugs, with mean prescription expenditures nearly seven times higher ($4,006 vs $599).
Accessibility and affordability barriers to health care contribute significantly to health disparities within the disability community. Adults with disabilities are four times more likely to report that their health is fair or poor compared to adults without disabilities. This issue is compounded by race. For example, one study found that about 50 percent of Latinx and Black people with disabilities rated their health status as fair or poor, compared to 42 percent of non-Hispanic, white individuals with disabilities. Research suggests that racial and ethnic minorities with disabilities are more likely to report that they are in fair or poor health, obese, have a chronic health condition, and have greater difficulty accessing care than do racial and ethnic minorities without a disability.
These findings are especially concerning considering that people with disabilities who are Black, Indigenous and People of Color have the highest rates of disability in the country. In Illinois the disability rate by race is approximately 8 percent for white working age adults, 14 percent for Black/African American working age adults, 16 percent for persons who are Native American, 3 percent for persons who are Asian American and 8 percent for people who identify as some other race. Factors contributing to higher rates of disabilities in Black and Indigenous communities include higher rates of poverty, less access to quality health care, higher likelihood of participating in dangerous jobs and other risk factors associated with social determinants of health.
Adults with disabilities also face unique attitudinal barriers to care, as reflected in The Urban Institute’s Health Reform Monitoring Survey which found that about 24 percent of adults with disabilities reported experiencing disrespectful treatment or felt judged unfairly compared to just 8 percent of the general population.
Despite the massive inequities that people with disabilities experience in the state of Illinois and throughout the nation, there remains a pervasive belief that people with disabilities cannot achieve a state of health and wellness and that when they exhibit poor health it is solely an unavoidable and natural outcome of disability, rather than an outcome of systemic inequality based on disability status. This assumption masks how institutional barriers and biased practices contribute to health disparities for people with disabilities. Health care policy, research and practice must challenge disability bias by responding to the real structural, financial and cultural barriers that people with disabilities experience when trying to access care. These barriers include limited availability of accessible health care facility structures and equipment, limited staff training and restrictive health care policies and practices that do not take into account the full spectrum of diversity of people with disabilities and their needs.
Future Illinois health care reform must consider disability accessibility as a social determinant of health throughout plan design. It must explicitly state that the disability community is a population that experiences health disparities, prioritize closing these health gaps as part of its equity goals, and clearly outline how. Improve disability data collection by using standardized disability identifiers across surveys, including people with disabilities in general health research and increasing the amount and coordination of disability research. Illinois health care reform must establish health plans that ensure the services and facilities associated with them meet the needs of people with multiple types of disabilities and are compliant with the accessibility and nondiscrimination standards established by state and Federal laws, including Section 504 of the Rehabilitation Act, the Americans with Disabilities Act and the ACA. It must include home and community based services (HCBS) as a right not just a state “option,” ensure that health care plans and services adequately cover the full range of costs for HCBS, and the equipment and supplies associated with HCBS care such as complex rehabilitation technology, incontinence supplies, home modifications and more. Then and only then will people with disabilities in Illinois have equitable access to health care that can be considered feasible, accessible and affordable. To join us in this fight, sign up to receive our newsletter or consider joining the coalition.