Historically, a three “levels of prevention” framework was adopted by the Commission on Chronic illnesses in 1957 The “levels of prevention” were later developed into five levels. In this framework primary prevention is conceived as being for “healthy people” and is aimed at efforts to prevent disease, disability, and injury. Secondary prevention is conceived as being for “healthy appearing” people and is aimed at early detection of disease through efforts such as screening and at early treatment to reduce progression. Tertiary prevention is conceived as being for people who are “symptomatic” and is aimed at rehabilitation and efforts to assist people to accommodate to disease, disability and injury with focus on quality of life. In 1978, the concept of primordial prevention was developed which is aimed at addressing risk factor reduction for the entire population. In 1986, the concept of quaternary prevention was developed which is aimed at identifying and protecting people at risk of over-medicalization and over-use of medical procedures.  

The “levels of prevention” framework relegates the more than 25% of adults and more than 4% of children who have disabilities and the more than 50% of adults and 40% of children who have chronic conditions to only needing tertiary prevention. It is concerning that ableist frameworks such as “levels of prevention” led to health systems failing people with disabilities in the early period of COVID 19 and that they faced devastating consequences of high rates of contracting and dying from COVID along with violation of their civil rights. With this framework, it is not surprising that people with disabilities have less access to preventive services and health promotion, less access to health care, and are more likely to be diagnosed in later stages of cancer than people without disabilities. It is not surprising that there has been little or no detectable change in a Healthy People 2030 specific objective to reduce the proportion of adults with disabilities who delay preventive care.  

The “levels of prevention” framework comes from the same conceptions as the current – considered as ableist –  mission statement of the National Institutes of Health (NIH) to “seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce illness and disability”. The assumption in this statement is that people with disabilities are, by definition, unhealthy and not capable of benefiting from efforts to enhance health and lengthen life. In 2023, NIH began a process to change this mission statement. 

Public health professionals have spoken out about the field’s contributions in perpetuating ableist practices and acts. Christine Mitchell, a public health researcher and advocate, argues that “If we – as a field – claim to care about health equity, we must listen to and learn from disabled people in a consistent, respectful, and sustained way and we must center disabled people in our policies and practices.” Interprofessional healthcare students are taught that having a disability is intrinsically a negative health outcome that must be eliminated and cured instead of working proactively to dismantle ableism as a determinant of health, further stigmatizing disability.  

We realize that many educators still teach “levels of prevention” because they know the importance of prevention. They likely have not considered the harmful impact of relegating people with disabilities to tertiary prevention. However, when the ableist and uninformed language of educators is combined with an overall lack of curricula regarding effectively working with people with disabilities, health care professionals will continue to contribute to health inequities for people with disabilities.

“Levels of prevention” are not referenced or used in Healthy People 2030. In efforts for inclusion the Centers for Disease Control holds that people with disabilities should equally benefit from prevention and health promotion as people who do not have disabilities. The NIH has proposed an inclusive new mission statement to “seek fundamental knowledge about the nature and behavior of living systems and to apply that knowledge to optimize health and prevent or reduce illness for all people.” It is time to give up the outdated and ableist conceptions involved in “levels of prevention” and adopt inclusive concepts of prevention not based on pathologizing disability and denying their needs for all preventive care services.

For some time it has been known that people with IDD experience poorer health status than the general population and this may place patients with IDD at higher risk for adverse events while in hospitals. Before entering the acute care space, people with IDD face barriers to accessing primary healthcare, including lack of provider education and training, physicians not welcoming patients with disabilities in their practices and taking specific steps to not care for this group. People with IDD then experience greater use of older medication regimens in treatment for health issues such as diabetes and hypertension and disparities in access to routine cancer screenings. Considering these issues, it should come as no surprise that people with IDD are often hospitalized with conditions that could have been addressed in primary care settings.

Actions to improve care, based on already available resources, can and should be taken to address the dangers of being hospitalized for people with IDD, including tailored programming/ reasonable adjustments in hospital care and training of leaders in improving healthcare with people with IDD.

Tailored programming/reasonable adjustment efforts across sites, such as Rush University Medical Center and Georgetown University Medical Center in the US and the Geneva University Hospital in Switzerland, include use of electronic health records to improve care, targeting educational programming to groups of professional staff, and other efforts. The vast majority of hospital systems use electronic health record systems and can develop customized aspects based on need. For example, at Rush University Medical Center, specific nursing standards of care were created and made available in the electronic health record system to support nurses in the planning and implementation of care delivery for patients with IDD.

Efforts at other institutions are being encouraged to implement tools in the electronic health record system to improve care. Many hospital systems also use learning management systems to provide ongoing learning and training opportunities for staff. Accompanying the above-discussed specific nursing standards of care at Rush, an educational module was implemented into the learning management system. More than 300 nurses completed the online training module, including nurses from four units targeted due to greater concentration of patients with IDD on those units (78% completed). Other efforts of targeted educational programming include training on effective documentation of IDD for Emergency Department staff, including nurses (48% completed) and advanced practice providers and physicians (39% completed), and training for support staff such as security, with results allowing professional staff to evaluate medical problems. Other efforts using existing resources include implementation of mock Joint Commission tracers of care to identify areas of breakdown of standards and protocols of care (such as with communication and transitions in care), student volunteer visits (neurodiversity allies) with patients with IDD, and providing educational materials on services to families and patients. Preliminary work indicates that such programming improves cost outcomes.

Health leaders require training to address health equity, a multi-factor cross-sectional issue. An example of leadership training to achieve health equity for people with IDD is the Golisano Fellowship in Developmental Disability Nursing. Nurse Fellows have led efforts to develop IDD friendly healthcare initiatives at an academic medical center and to improve access to home hospital programs for patients with IDD.

It is time for healthcare institutions to take a tailored programming/reasonable adjustment approach to care of patients with IDD and provide education/training opportunities to new leaders in the field. Using available resources to bring forward interventions that will benefit patients with IDD and promising new leaders has the potential to reduce preventable safety events for patients with IDD, the related effects on lengths of stay, mortality, and the resultant burden to the healthcare system.

In the United States, 26% or one in four adults have disabilities, making this the largest minority group in the United States. Rates of disability are particularly high among two groups that have historically experienced and continue to experience the effects of systemic racism and discrimination, Blacks and Indigenous peoples. Along with the general lack of inclusion in research of people from racial and ethnic minorities, the lack of inclusion of people with disabilities is likely to have a disproportionate impact on these communities.

Why is this happening? Part of the answer may involve bias from clinical research funders. For example, the National Institutes of Health (NIH) are a major funder of clinical research. The NIH mission “is to seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce illness and disability.” The statement reflects bias against people with disabilities. At least 25% of adults have disabilities, more than 50% have at least one chronic condition and more than 27% have more multiple chronic conditions.

In Vital Directions for Health and Health Care Initiative of the National Academies of Sciences, Engineering, and Medicine, Lipstein et al (2016) discuss the need for work to promote population health and keep people healthy, and to manage the health needs of people with chronic medical and behavioral conditions. The NIH mission, as stated, does not reflect the need to seek and apply knowledge about how to manage the needs of people with chronic conditions and disabilities in order to improve their health and lengthen life, an issue already described as needing attention in relation to public health programming.

Another issue may be the composition of Institutional Review Boards that approve research. It is suggested, but not mandated, that if an IRB regularly reviews research that involves specific groups such as people with disabilities, membership of individual(s) who have knowledge and experience in working with such groups is suggested. The non-mandatory regulation does not specifically say that the individual(s) should be someone who is a member of the specific group. Of course, the issue may be a Catch 22 situation as people with disabilities are being excluded from research. Information on people with disabilities on Institutional Review Boards can not be found.

Bias against people with disabilities among healthcare professionals may be another issue contributing to bias on the part of NIH. Training of health care professionals in the care of people with disabilities is still lacking, despite the fact that Section 5307 of the 2010 Patient Protection and Affordable Care Act (PPACA) requires that such training be developed, In addition, people with disabilities are underrepresented in the health care workforce, with descriptions of exclusion of people with disabilities from nursing and medicine.

Taking the issues together, excluding people with disabilities from clinical research may be the tip of the iceberg and is indeed bad news. Funders of clinical research need to take specific steps to include people with disabilities in research. In health care generally, measures are needed to address bias against people with disabilities, improve the disability diversity of the workforce, and improve the education of health care professionals in the health and health care of people with disabilities.

The BBC report is not the first. In 1972, there was documentary exposure of similar horrific conditions at the Willowbrook institution in Staten Island, New York. Two months after the documentary, a successful class-action suit was filed to close the institution and find alternative placements for residents, giving impetus to other class-action suits across the country. The events influenced the passage in 1975 of the Developmental Disabilities Assistance and Bill of Rights Act and the Education For All Handicapped Children Act, and the 1980 Civil Rights of Institutionalized Persons Act.

 My 46-year old son benefits from the legislation passed after Willowbrook. He lives in a small group home in a neighborhood north of Chicago. To live there, he relies on Direct Support Professionals (DSPs). These professionals make sure he attends his day program where he is paid for both a piece work job and assisting with janitorial services at the facility. DSPs assist him to attend a theater group in which he and others develop theatrical performances. He participates in art and craft activities and in Special Olympics. The DSPs make sure he has nutritious meals and that he takes his medications. They encourage contact with family and friends. As a parent, I don’t have anxiety about how he will live an active life.

The Covid-19 pandemic highlights the crucial role of DSPs in the health of people with IDD and how fragile the system is. In the early period, other than older age, the presence of intellectual disability was the strongest risk for dying of COVID. My son contracted COVID-19, along with others where he lives. Due to quarantine needs, he relied on staff willing to stay with their clients 24/7. Despite their vital roles, the working conditions of DSPs grew worse during the pandemic. In 2020, the number of DSPs decreased by around 10% as agencies closed some services and, at the same time, increased overtime hours as a way to limit numbers of staff rotating into facilities. Agencies reported not taking new referrals for services. This took place at a time when the need for DSPs is expected to grow with the aging and deaths of baby boomer parents of people with IDD.

DSPs are part of the long-term care workforce that has over-representation of racial and ethnic minorities and faces systemic structural racism reflected in low wages and unstable working conditions. The DSP workforce is majority minority with 60% being people of color and 29% being immigrants. DSPs are overwhelmingly female, with a median age of 47.Two-thirds of them work full-time, with low pay; In 2019 the median hourly wage was $12.80 and had only increased by 2% since 2009. More than half of DSPs also rely on public assistance such as housing, medical, and food assistance to live. About 70% are the primary wage earners in their households. The job turnover rate nationally is about 43%, but is as high as nearly 65% in some states.

Change needs to happen. At the federal level, one issue is the lack of a Standard Occupational Classification for DSPs. This means that data collected using the classification system are not useful in determining workforce trends, shortages, and needs of DSPs. In April, 2021 Senators Maggie Hassan (D-New Hampshire) and Susan Collins (R-Maine) re-introduced the Recognizing the Role of Direct Support Professional Act that would direct the Office of Management and Budget to establish a separate standard occupational code for DSPs. There have been efforts to address the issue for years; It is time for the legislation to be passed.

Pay of DSPs is affected by state budgets. Advocates in Tennessee, including consumers with IDD and family members, were successful in budget legislation that included a substantial pay increase for DSPs. Such action needs to be taken in other states. Competency-based training requirements for DSPs have been implemented in New York, although training requirements vary between states and federal requirements are lacking. You can work in your state to address training requirements. National and state organizations have ongoing advocacy efforts to improve the status of DSPs. Get involved. If there is no staff, no services will be available.

One in four adults in the US have disabilities. Even before the Supreme Court ruling women with disabilities faced discrimination and worsening access to reproductive health care. Pregnant women with disabilities in the US have higher rates of pregnancy-related complications and deaths than pregnant women without disabilities. It is known that people with disabilities who are also from minority, ethnic, and other marginalized communities face a “double burden” in health disparity. The United States is already one of two countries with recent increases in maternal mortality. The elimination of abortion services in many areas of the country will undoubtedly lead to higher maternal mortality among women with disabilities, as it is expected to do generally and particularly among women of color. 

Unfortunately, the relationship between the disability rights movement and the reproductive rights movement is troubled. As noted in an editorial of the California Law Review, the reproductive rights movement often portrays the presence of disability status with a fetus as tragic and justifying the right to abortion, while anti-abortion advocates often use more empowering language regarding the parenting of children with disabilities, all while states with the most restrictive abortion laws also have funding and policies that make it harder to raise children in healthy environments. Further, the disability rights movement has concerns with the almost total loss of children with Down syndrome in countries such as Iceland, where almost 100% of women who receive a positive pre-natal test for Down syndrome opt for abortion. Related to these types of issues, some prominent women in the disability community have favored overturning Roe v Wade. Others note the “strange bedfellow” aspect of the intersection of the disability rights movement with the anti-abortion movement. 

The health care system broadly also has its own troubled relationship with the disability rights movement. In March 2020, at the beginning of the COVID-19 pandemic, 183 disability rights and justice organizations supported a call to action to protect the lives and rights of people with disabilities, noting a year later that this had not happened. Nearly two years in, the Biden administration rightly issued an announcement on new actions to address the needs of people with disabilities in the responses to COVID-19. 

Going forward, health care organizations concerned with the impact of the Supreme Court decision on the health of women and reproductive rights organizations should not wait to address disability issues and should consider the establishment of Diversity, Equity, Inclusion, and Accessibility (DEIA) Committees to ensure that their efforts to protect women’s health and reproductive rights are fully inclusive. What are these committees? Many organizations are working to improve the diversity of their workforce, clientele, and their outreach through Diversity, Inclusion, and Equity (DEI) Committees, including many health care organizations. The committees are typically made up of diverse staff members who are responsible for helping bring about cultural, policy, procedural, and needed ethical changes necessary in organizations. DEI Committees are thought to have many benefits. Forbes published 15 benefits including ensuring that employees feel safe, respected, and connected. A few years ago only about 4% of businesses had diversity initiatives around disabilities, but more recently, organizations have established DEIA Committees.

Establishing DEIA Committees is in line with President Biden’s January 25, 2021 Executive Order on Diversity, Equity, Inclusion and Accessibility in the Federal Workforce. The US Department of Labor refers to DEIA as a foundation for meaningful change as it includes ensuring that programs, services, communication and facilities are inclusive of people with disabilities and can be used by them. It’s time to ensure that people with disabilities feel safe, respected and connected going forward on protecting women’s health and reproductive rights.  

Unfortunately, bias exists at the very top of policy makers who make decisions on addressing the COVID pandemic. When Dr. Rochelle Walensky, accomplished infectious disease scientist and Director of the Centers for Disease Control and Prevention, was interviewed on Good Morning America in January, she discussed a research study citing that over 75% of vaccinated people who died from covid had four or more co-occurring conditions. Despite having media consultants and having made clear statements about health equity, her unedited interview remarks stated that people with disabilities were “unwell” to begin with and that the research study findings were “good news” in the context of vaccinations for COVID.

The disability community responded with a public statement signed by 135 disability-related organizations. A blog was also published in Anti-racism Daily in response to Dr. Walensky’s comments. Both the blog and the letter noted that people with four or more chronic conditions are marginalized groups, people with disabilities and disproportionately people of color.

Disability organizations such as the Partnership for Inclusive Disaster Strategies, the World Institute on Disability, and the National Council on Independent Living issued a call to action about the biased language and denial of civil rights protections from governmental and public health organizations, contributing to the deaths of many people with disabilities. Black, Brown, and Indigenous peoples along with other underrepresented groups bear the greatest burdens of this neglect, highlighting systemic inequities that keep people from fulfilling all aspects of healthy professional and social living..

The bias extends to health care providers. According to Health Affairs, the perceptions and attitudes of physicians toward persons with disabilities are still incredibly biased. While 82.4 percent of physicians reported that the quality of life for persons with significant disabilities was worse, only 40.7 percent felt very confident about their ability to provide the same quality of care given to people without disabilities. Furthermore, only 56.5 percent of physicians strongly agreed that they welcome persons with disabilities in their practices.

There is widespread news coverage citing egregious examples of death related to denial of care of people with disabilities.

With the lack of mitigation strategies (other than boosters) to reduce the risk of contracting COVID and becoming seriously ill, some people with disabilities are afraid to leave home and have put off needed medical care. Because the covid crisis continues to be politically divisive, Dr. Walensky’s interview was referenced by anti-vaccine and anti-mask supporters as an example of how the CDC may be overcounting COVID deaths while the actual causes of death could be co-morbidities. Despite disagreements about COVID, there appears to be consensus from both sides of the COVID divide to minimize deaths of people with disabilities.

To address the ableist rhetoric towards disability, healthcare leaders should follow the recommendations that disability advocates shared with Dr. Walensky for the adoption of disability-inclusive policies. The recommendations include regular meetings with stakeholders from the disability community and stakeholders who support inclusive policies that center people with disabilities and other communities disproportionately impacted by COVID. Furthermore, health care education and accreditation bodies need to enforce standards in the education and training of health care providers. In the Health Equity Framework for People with Disabilities, mandates to do so under federal law are recommended.

Other countries are also modeling more inclusive and comprehensive solutions focused on disability. One example would be the United Nations disability policy developed during covid. This policy calls for a disability-inclusive response to COVID using a human rights approach and including persons with disabilities as partners in planning and implementation of strategies. A Disability Area Partnership was adopted by the Parliament in Denmark that agrees to create security while battling dissatisfaction and loneliness for vulnerable groups while reopening. In Canada, the government established a COVID-19 Disability Advisory Group (CDAG). The CDAG advises based on the lived experiences of persons with disabilities during the pandemic, considering challenges and strategies to reduce the disproportional impact of covid on the disability community.

The government and the entire American healthcare system can make stronger efforts to acknowledge the health disparities of covid on the disability community by following the models provided by other nations.In doing so, oversights can be prevented that minimize the deaths of people with disabilities while protecting their health during the current pandemic and in possible national health emergencies in the future.