Abstract— The CDC defines health disparities as “preventable differences in the burden of disease, injury, violence, or opportunities to achieve optimal health that are experienced by socially disadvantaged populations.”
Disability is an emerging field within public health. After conducting a year-long study that reviewed more than 1200 papers on healthcare implications for the disabled community, Dr. Eliseo J. Pérez-Stable, M.D., director of the National Institute on Minority Health and Health Disparities (NIMHD), designated people with disabilities as a population with health disparities for research supported by the National Institutes of Health. “Access to quality health care is a basic human right. It is unacceptable that in 2023, every person in the United States of America does not have that access,” said Health and Human Services(HHS) Secretary Xavier Becerra. “Research to understand the barriers and unmet needs faced by people with disabilities, and to develop effective interventions to address them, is needed. This designation will help to improve access to healthcare and health outcomes for all people.”
This paper will examine some of the disability health disparities that arise from inaccessible physical environments, social assumptions and prejudices, and inflexible policies and procedures, as well as how federal and state governments should actively work to reduce inequities.
Individuals with disabilities constitute the largest minority group in the United States, accounting for almost 27% of the adult population. It is very important to differentiate between disability as a human condition and disability-related health disparities, which leads to compromised healthcare, ill-health, institutionalization and premature death. These disparities exist due to many barriers such as physical accessibility, social bias and prejudices, lack of communication skills, economic stress resulting in food insecurity, lack of good/ permanent housing and lack of health insurance. As a result, they experience higher rates of disease, disability and death, lower quality of life and lower life span.
Disability inclusion is critical to achieving the Sustainable Development Goals and global health priorities to achieve health for all. Investing in health for persons with disabilities will not only benefit those individuals but also entire communities. According to the WHO - “There could be almost an US$ 10 return for every US$ 1 spent on implementing disability inclusive prevention and care for noncommunicable diseases.”
Work on Healthcare disparities is largely focused on racial and ethnic minorities. It is only recently that the Department of Health and Human Services has recognized disabled individuals as a health disparity population. According to the latest available data, almost 27% of the US adult population is disabled.
The statistics of exclusion from basic health care for all people with physical disability are eye-opening: In one past study, fewer than 10% of primary care clinics in California reported having accessible exam tables, even though 1 in 7 American adults live with physical disability affecting their mobility. More than 50% of the disabled population are 75 years of age and above. If you are a person with physical disability in need of basic health care, evidence shows you will not receive the same level of care as your nondisabled peer.
- As of 2019, an estimated one in four, or 67 million adults in the United States reported a disability.
- Data from 2019 shows, compared to people without disabilities, people with disabilities have less access to health care, have more depression and anxiety, engage more often in risky health behaviors such as smoking, and are less physically active.
- Some persons with disabilities die up to 20 years earlier than those without disabilities.
- Persons with disabilities have twice the risk of developing conditions such as depression, asthma, diabetes, stroke, obesity or poor oral health.
- Health inequities arise from unfair conditions faced by persons with disabilities, including stigma, discrimination, poverty, exclusion from education and employment, and barriers faced in the health system itself.
Healthcare disparities for disabled individuals represent a concerning problem within the healthcare system. Nearly 1 in 5 people have a disability in the United States, including approximately 67 million adults, and 7.3 million kids. According to the World Health Organization (WHO), over 1 billion people are disabled globally, and are more likely to find health care providers’ skills inadequate, be denied healthcare, and treated badly in the system. Around 50% of these individuals cannot afford adequate healthcare, pushing large populations into extreme poverty.
These disparities encompass a range of challenges that inhibit equitable access to quality healthcare for people with disabilities. First and foremost, access to healthcare services can be hindered by physical/logistical obstacles, such as inaccessible facilities and transportation options, which can make it challenging for disabled individuals to obtain necessary care. Additionally, access to health insurance is minimal and disparities exacerbate the issue, such as higher rates of being underinsured. This can limit their financial ability to afford medical treatments, medications, and assistive devices, as well as preventive care, like screenings/vaccinations.
Discrimination on the grounds of disability is prohibited by the Americans with Disabilities Act and Section 504 of the Rehabilitation Act. There have long been precise rules governing a building's physical layout, such as designated entryway widths and ramp proportions, which serve to dispel uncertainty about what constitutes entry into a clinic. However, until recently, health care administrators were not guided by any guidelines when it came to access to health care services through the use of common medical diagnostic equipment, such as exam tables, weight scales, and mammography machines. It was only recently, under the Affordable Care Act, the U.S. Access Board issued accessibility standards for medical equipment in early 2017.
Despite ongoing efforts to address the issues surrounding healthcare disparities, the problems have persisted. These disparities are evident in various aspects of healthcare, from access to services to the quality of care provided. Current stances on this issue highlight the need for continued advocacy, policy changes, and improved awareness.
The Americans with Disabilities Act (ADA) was signed into the law on July 26, 1990, by President George H.W. Bush. It was designed to protect the rights and ensure equal opportunities for individuals with disabilities. It was originally meant to prohibit discrimination on the basis of disability and promote full participation, equal access, and reasonable accommodation for people with disabilities in all aspects of public life. Being split up into 5 titles, the act addresses each aspect of life: employment, transportation, public accommodations, communications, and access to state and local government' programs and services.
- Title I focuses on employment, specifically prohibiting discrimination against qualified individuals with disabilities in the workplace and requiring employers to provide reasonable accommodations to enable individuals with disabilities to perform their jobs.
- Title II pertains to public entities and services, ensuring that state and local governments do not discriminate against people with disabilities in their programs, services, and activities; it also mandates accessible public transportation.
- Title III addresses public accommodations and commercial facilities, requiring businesses open to the public to be accessible to individuals with disabilities. This encompasses a wide range of businesses, from restaurants and hotels to theaters and retail stores.
- Title IV pertains to telecommunications, promoting equal access to telecommunications services for individuals with hearing or speech disabilities, primarily through the use of relay services.
- Title V contains miscellaneous services, including technical assistance for businesses and government agencies to assist ADA compliance, as well as provisions related to the enforcement of the law.
While the ADA has made significant progress in equity for individuals with disabilities, there are critics who find fault in its effectiveness. Some argue that more needs to be done to ensure compliance and that the law should be expanded to address emerging issues related to technology and online accessibility. The Affordable Care Act tried to fill in some of the gaps related to accessibility standards for medical equipment through the U.S. Access Board in early 2017.
- Medical Diagnostic Equipment: The accessibility standards for MDE under the Rehabilitation Act provide design criteria for examination tables and chairs, weight scales, radiological and mammography equipment, and other diagnostic equipment that are accessible to people with disabilities. They include requirements for equipment that necessitates transfer from mobility aids and address transfer surfaces, support rails, armrests, and other features.
- Prescription Drug Container Labels: The Board has led the development of advisory guidance on making prescription drug container labels accessible to people who are blind or visually impaired or who are elderly. This initiative was authorized by the Food and Drug Administration Safety and Innovation Act which President Obama signed into law in July 2012.
- Design of Accessible COVID-19 Home Tests: This best practices document captures and publicizes learnings from the NIH RADx® Tech accessibility program to assist manufacturers in the design of COVID-19 and other in vitro diagnostic (IVD) home tests that ensure greater accessibility for users that have no vision or low vision, have a reduced range of dexterity or motor skills, and are aging.
Individuals with disabilities – both mental and physical – are protected by such policies. Those with mental disability, for instance, may require more effective communication techniques such as simple language, visual aids, or alternative methods of communication.
On the other hand, physically disabled individuals likely require more accessible facilities and should be provided with ramps, elevators, accessible restrooms, and appropriate signage. Additionally, healthcare professionals, insurance providers, caregivers, and government agencies would be responsible for creating, implementing, and regulating healthcare policies and programs that address disparities in the healthcare system.
Risks of Indifference
Continued indifference in health disparities of the disabled population is a moral and economic issue that needs to be addressed at every level within our country. As a country that espouses justice for all, it is inhumane to stand by and let these disparities percolate within our society. Status quo would ultimately result in more frequent spread of communicable/ non-communicable diseases, increased poverty, lack of trained workforce to care for the disabled population and an overall increase in healthcare costs.
Besides the moral incentive, it is also an economic motivation to put systems and policies in place to address the health disparities of the disabled population. Research has shown that there is a good return on investment for evidence-based programs implemented in communities that prioritize the aging and disabled population. A collective effort to improve the quality of life of disabled people ultimately contributes to the growth of the economy and overall societal setting,
The issue of disability awareness in healthcare regards human rights and equity. Since views vary between parties, specifically that of democratic and republican ideologies, issues like health care disparities for disabled individuals can often go overlooked. Conservative fiscal policies often cause hindrance in the allocation of money towards minority groups, varying directly with social reform policies, which advocate for the contrary. However, the opportunity for both social reform and monetary improvement benefits both parties.
The financial investment necessary to advance disability inclusion in the health sector is an investment with dividends, two published WHO-led cost-benefit analyses on NCDs and cancer prevention. For example, implementing cancer care with a 10% increase in costs could bring an economic and societal return of nearly US$ 9 per US$ 1 spent. Similarly, there could be a return of nearly US$ 10 per US$ 1 spent on disability inclusive NCD prevention and care, assuming a 10% increase in costs.
A substantial amount of the variations in health outcomes between people with and without disabilities are due to unjust or unfair circumstances that are avoidable and cannot be explained by the underlying health condition or impairment.
The existence and persistence of health disparities raises moral problems and should be seen as unacceptable from a human rights standpoint since they restrict persons with disabilities from exercising their fundamental right to the best possible quality of health.
They may also be considered illicit conduct under international law and state legal instruments.
There are many factors that contribute to the health inequities experienced by disabled people. Inequities for persons with disabilities exist in all three health outcomes: premature mortality, increased morbidity, and increased functioning limitations.
- Mortality: Persons with disabilities have higher rates of premature mortality compared to persons without disabilities.
- Morbidity: The health inequities in morbidity faced by persons with disabilities manifest in the higher rates of comorbid health conditions in persons with disabilities compared to those without disabilities. This may be in the form of a higher rate of communicable and non-communicable diseases, such as tuberculosis, diabetes, stroke, sexually transmitted infections or cardiovascular problems. They are also at increased risk of mental health conditions, poorer oral hygiene and untreated dental disease, and poor maternal health.
- Functioning: Persons with disabilities experience higher levels of functioning limitations due to barriers in the environment.
The mechanisms that cause these inequities are complex and may be a combination of one or more affecting every individual. Some of these factors include:
- Structural Factors: Different cultural and societal values often manifest in ableism, stigmatization, and discrimination towards persons with disabilities in all facets of life. They frequently experience negative attitudes of community members which can discourage health-seeking behaviours of persons with disabilities and their families.
- Societal Determinants: There is a well established link between the health conditions into which people are born, raised, grow and live such as poverty, employment, education and a range of other intersecting factors such as violence, climate impact, transportation, food insecurity,etc.
- Risk Factors: These can include tobacco use, diet, alcohol consumption and amount of exercise.
- Health Systems: The gaps and barriers across all building blocks – for example in service delivery, the health and care workforce, health information systems, and the financing and leadership of health systems – affect persons with disabilities and their families.
Addressing all of the above contributing factors is essential in order to develop multi-layered, innovative, intersectional and participatory policy solutions. Health equity for persons with disabilities will only be achieved through the implementation of PHC that integrates targeted disability-inclusive strategies within mainstream actions.
Political Commitment, Leadership and Governance
There needs to be a top down stewardship role for disability inclusion, that prioritizes health equity for persons with disabilities in every town, city and state. This is only possible by integrating disability inclusion in national health strategies, preparedness and response for health emergencies and creating networks, partnerships and alliances to help. There needs to be a committee or central point within the government to further this cause. Social protection systems - such as access to formal employment, contributory social security, and decent wages - are critical.
Healthcare budgets need to adopt progressive universal healthcare as a principle, taking into consideration health services for specific impairments and health conditions, as well as the cost of making these facilities and services accessible. employment, contributory social security, and decent wages. health financing is comprised of four interrelated functions and policies: revenue raising; pooling of funds (accumulation of prepaid funds on behalf of some or all of the population); purchasing of services (allocation of resources), and policies on benefit design and rationing (who is entitled to what, and at what if any cost at the point of use)
Engagement of stakeholders and private sector providers
A good way to ensure that the special needs of this population is met is to ensure that they and their respective organizations are fully engaged in the health sector processes. Engaging providers that offer informal support services, disabled people in research and including them in the health research workforce gives new perspectives to care options. Private sector should also be invited to support the delivery of disability inclusive services, slowly making that the norm instead of an exception.
Models of care
Integration of health care services by providing essential medicines and assistive technologies closer to where people live; and ensuring continuous, comprehensive, coordinated, and people-centred care. All facilities must invest in support services such as interpreters, and support persons and access to assistive products.
Health and care workforce
Health care workers need to be trained so they can develop competencies for disability inclusion at all levels. Including people with disabilities in the health and care workforce also strengthens this training and builds relationships. All non-medical staff working in the health sector also need to be educated on issues related to accessibility and respectful communication. We must be able to guarantee free and informed consent for all persons with disabilities.
It is important to apply a universal design-based methodology while creating or renovating healthcare buildings and services, so fair and suitable accommodations are made for people with impairments. Reasonable accommodation is defined as “necessary and appropriate modification and adjustments not imposing a disproportionate or undue burden, where needed in a particular case, to ensure to persons with disabilities the enjoyment or exercise on an equal basis with others of all human rights and fundamental freedoms”
Digital technologies for health
There are many new technologies today that can improve digital delivery of health services while adopting international standards of digital health technologies. For persons with disabilities, digital technologies have provided long-awaited opportunities “to receive evidence-based health care comfortably in their own homes”. The use of mobile-based software applications for vision or hearing assessment, or artificial intelligence technologies, enhances the access of quality health care to the most neglected communities. The use of electronic health records helps health providers to make better decisions, and managers to audit service quality and cost, as well as to monitor system performance. Assistive technologies (AT) are devices or equipment that can be used to help a person with a disability fully engage in life activities.
Systems for improving the quality of care
Quality of care is fundamental for every person; care can only be of good quality if it is accessible and reaches everyone, including persons with disabilities. One proposed solution includes the electronic collection of feedback in more technologically-advanced settings. A disability-inclusive feedback mechanism allows for us to integrate relevant questions and complaints that can be addressed to increase quality of care.
Monitoring and evaluation
Monitoring and evaluation of health progress and performance of the health systems are critical to ensure that any policies, actions, or decisions are implemented as planned. This is done at the higher level by the city, state or federal government. Identifying persons with disabilities and how they are treated can be facilitated through the routine data collection in each of the facilities - by coding at the entry level - and then monitoring the patient through his entire healthcare process. Outcome and impact levels, both facility and population-based data are fundamental sources to capture information on health outcomes for persons with disabilities when disability status is identified.
Conclusion & Recommendations
Addressing healthcare disparities for disabled individuals entails a societal shift towards inclusivity and anti-discrimination. Legislation and policies aimed at protecting the rights of disabled individuals have been implemented in various countries, but their enforcement and effectiveness remain uneven. Ongoing advocacy efforts seek to strengthen these protections, raise awareness, and promote a culture of respect and equality within the healthcare system.
Overall, healthcare disparities for disabled individuals persist as a multifaceted issue that demands ongoing attention and action. Current stances on this issue emphasize the importance of improving accessibility, reducing biases, adopting inclusive care models, and promoting broader societal changes to ensure that disabled individuals receive equitable and high-quality healthcare. It is a shared responsibility of healthcare providers, policymakers, and society as a whole to work together in addressing these disparities and improving the health outcomes of disabled individuals.
The Institute for Youth in Policy wishes to acknowledge Paul Kramer, Carlos Bindert, Gwen Singer, and other contributors for developing and maintaining the Programming Department within the Institute.
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