Health policy narratives contributing to health inequities experienced by people with intellectual/developmental disabilities: New evidence from COVID-19

Abstract

This paper discusses three cultural narratives that threaten the health of people with intellectual/developmental disabilities (IDD) and which have become more evident during the COVID-19 pandemic. These meta-narratives are the medical model of health/disability; the population health approach to health inequalities; and policies premised on the assumption of the importance of national economic growth as an incentive for reducing health inequalities. Evidence exists that health research is more likely to become policy if it fits within a medical model and addresses national economic growth. These two criteria are particularly problematic for people who have IDD. The paper also proposes a research model to facilitate the inclusion of IDD related issues in future policy regarding health inequalities.

Background

Health inequalities are defined as differences in the health status of individuals or groups^1,2; while health inequities are systematic and unjust conditions that produce health inequality.^3–5 The COVID-19 pandemic has exacerbated health inequalities across populations. ⁶ People who have intellectual/developmental disabilities (IDD) have been particularly adversely affected by COVID-19.^7–9 In Canada, in comparison to adults without IDD, COVID-19 positivity rates were 1.28 times higher for adults with IDD and 1.42 times higher for adults with Down syndrome. ⁷ Lunsky et al. ⁷ also reported that compared to adults without IDD, adults with IDD were more than twice as likely to be hospitalized and to die following a COVID-19 diagnosis; for adults with Down syndrome, mortality rates were 6.59 times higher than those without IDD. This inequality is also reported in other countries. In the UK, Clift et al. ¹⁰ reported an estimated 4-fold increased risk for COVID-19–related hospitalization and a 10-fold increased risk for COVID-19–related death in persons with Down syndrome. Even after adjustment for a range of factors including age, socio-economic and geographical circumstances and pre-existing health conditions, in the UK people with IDD had a raised risk of death involving COVID-19 that was 1.7 times that of people who did not have IDD. ¹¹

However, these inequalities in health and mortality among people with IDD are not a new phenomenon and are not only a result of COVID-19. Decades of studies and evidence clearly point to the fact that compared to non-disabled populations, people who have IDD experience premature mortality^12,13 and poorer health.^14,15 Furthermore, people with IDD experience poorer health when compared to people with other types of disabilities. ¹⁶

Poor initial health and under treated chronic conditions are ongoing factors that contributed to the vulnerability of people with IDD to COVID-19. ¹⁷ Poor health among people with IDD may be a result of comorbid conditions. ¹⁸ But strong evidence indicates that differences in health and mortality between people with IDD and non-disabled adults are also a result of inequities. For people with IDD, inequities encompass a wide spectrum of socio-demographic factors, ¹⁹ including inequities within healthcare systems.^20,21 Inequities in healthcare are particularly evident in screening for common medical conditions. Compared to people without IDD, those with IDD experience lower rates of screening for hypertension, ²² osteoporosis, ²³ breast, cervical and colon cancer. ²⁴ In addition to lower rates of screening and under-diagnosis of cancers, Cuypers et al. ²⁴ found that people with IDD diagnosed with cancer were under-treated.

Additional examples of inequity in healthcare for people with IDD include poor hospital experiences, ²⁵ lower access to palliative care services ²⁶ and poor access to contraception. ²⁷ Neglect of pain management occurs frequently in adults with IDD. ²⁸ Weissman-Fogel et al. ²⁹ found that 48% of adults with IDD experienced pain and 10% experienced high levels of pain on a chronic basis. This pain was due to a need for adaptation of wheelchairs, lack of care for digestive, oral/dental and orthopedic conditions and lack of availability of analgesics for menstrual pain.

A variety of practices result in healthcare inequities for people with IDD. Ward et al. ³⁰ reported disparities in access, knowledge, communication and quality of healthcare. Access issues include physical barriers such as inaccessible buildings, ³¹ organizational barriers such as inflexible policies and procedures, ³¹ and barriers caused by low incomes and the high cost of health services and therapies. ³² Another critical inequity of practice arises from inadequate training of physicians and other healthcare providers. ³³ Communication issues have been reported. ³⁴ Furthermore, discrimination and stigma within healthcare is commonly experienced by those with IDD. ³⁵ Discrimination and stigma experienced by people with IDD is exacerbated by race and ethnicity. ³⁶

This paper argues that inequities in the health of people with IDD are also the result of accepted meta-narratives within the health care systems of European and North American countries. These meta-narratives are embedded into health research and healthcare policies. These meta-narratives are usually assumed and unspoken (in relation to disability) but nevertheless determine healthcare policy and research, directly affecting the health of people with IDD. This paper identifies three meta-narratives operant in health policy. 1. The medical model of health/disability, 2. the population health approach, and 3. assumptions that economic growth provides an incentive for reducing health inequalities. The COVID-19 pandemic and associated public health measures have magnified these meta-narratives.

Meta-narrative #1 the medical model of health/disability

In Western culture, the medical model remains the dominant discourse shaping health and health policy, ³⁷ in fact, the medicalization of health continues to expand particularly in the area of genomics. ³⁸ Hayes and Hannold ³⁹ traced the history of the medicalization of disability as part of the process in which bodies became viewed as objects that could be controlled and improved. The dominance of the medical model has resulted in disability and ill health being viewed as synonymous. ⁴⁰ Disabled people are given a sick role often despite the fact that they may report being healthy. ³⁹ Quality-adjusted life years (QALYS) is an example of a medically based measurement designed to provide a single measure of a person's quality and quantity of life. ⁴¹ The U.S. National Council on Disability has stated that there is concerning evidence that the use of QALYS results in discrimination against disabled people in access to healthcare. ⁴¹ Assumptions that disabled people are intrinsically unhealthy and have a low quality of life combined with the medical emphasis on reducing or eliminating disability has multiple ethical implications for the lives of people with IDD. These issues encompass the lifespan, beginning with selective abortion ⁴² and reproductive genetic technologies. ⁴³ End-of-life issues include concerns about disability and the legalization of medically assisted death, ⁴⁴ access to organ transplantation, ⁴⁵ and prioritizing and rationing of medical care.

Issues of rationing of medical care became alarmingly evident during the COVID-19 pandemic. ⁴⁶ In the United States, Lund and Ayers ⁴⁷ exposed the state-level rationing algorithms and guidelines regarding treatment of people with COVID-19 that directly impacted people with IDD. Civil rights complaints about these guidelines resulted in their revision. However, Lund and Ayers ⁴⁷ point out that in many crisis situations physicians make in-the-moment individual decisions about healthcare that involve judging the relative value of people's lives.

The medical model is also based upon hierarchies of expertise that often result in fragmentation of care ⁴⁸ through the provision of specialist services and discourages the inclusion of people with IDD as the experts in their own care. One effect of this is that health policy making is located within ministries of health and within specialist areas within health ministries (i.e., diet, exercise, infant and maternal health, chronic diseases, etc.). These divisions make it very difficult for complex, cross-ministry issues of social determinants of health and health inequalities to affect policy.

Within the medical model, disability is conceptualized as an individual problem rather than a societal problem. ⁴⁹ However, considerable evidence shows that social determinants of health are responsible for health inequalities. Social determinants of health include factors such as social exclusion, under-employment, low income, and stress. ⁵⁰ People who have a disability and particularly those with IDD experience these negative determinants of health. ⁵¹ However, health care professionals continue to view disabled people primarily through a medical model lens. ⁵²

The medical model focus on disability as an individual problem also ignores complex societal issues of discrimination and stigma, including discriminatory practices of healthcare providers. ⁵³ Within society in general, discrimination is more pronounced against people with IDD compared to those with other disabilities. This increased discrimination is documented in a study of attitudes towards disabled people; Barr and Bracchitta ⁵⁴ found that study participants expressed the most negative attitudes about people with developmental disabilities and the most positive attitudes about people with physical disabilities. This hierarchy of attitudes also exists among medical professionals. For example, Lewis and Stenfert-Kroese ⁵⁵ found that nursing staff had less positive attitudes towards caring for a patient with IDD compared to a patient with a physical disability.

In summary, the medical model of health/disability continues to have a wide reaching and significant impact upon the health and healthcare of people with IDD. As part of the medical model, ‘Disability has been and continues to be communicated to most public health practitioners as one of the three negative health outcomes, alongside morbidity and mortality that should be reduced or prevented.’ ⁵⁶ This influence is apparent in the training of healthcare professionals, access to care and in discriminatory practices in all aspects of healthcare from prevention to treatment to palliative care.

Meta-narrative #2 population health approaches

The theories of Geoffrey Rose ⁵⁷ are the historical foundation of population health approaches. Rose ⁵⁷ proposed that a large number of people at a small risk of disease give rise to more cases than a small number of people at higher risk and therefore implementing policies at the level of a vulnerable population is less effective than population-level health policies. Rose's strategy to public health emphasized change at the population level rather than targeting people at high risk. However, over the years, despite some successes of population level policies (i.e., seat belt use and fluoridation of drinking water) ⁵⁸ and improvements in some health indicators, gains at a population level have not benefited all groups equally. ⁵⁹ Bambra, Gibson, et al. ⁶⁰ found very little evidence of the effects of many macro-level policies on health inequalities. Braveman ⁶¹ concluded that although ill health can affect all social groups, the socially disadvantaged experience disease to the greatest extent.

There are no simple answers to why population health approaches have not had the desired effect of reducing health inequalities. Frohlich and Potvin ⁶² attribute the lack of success to population approaches failing to account for cumulative life course effects and the multiple risk factors experienced by vulnerable groups. Mackenbach ⁶³ proposed that lower social strata have become increasingly composed of individuals with personal characteristics that increase the risks of ill-health. Montez ⁶⁴ suggested that macro-level policies may be influenced by interests who actually benefit from the presence of social and health inequalities. In an analysis of the effectiveness of strategies aimed at reducing health inequalities in England, Mackenbach ⁶⁵ concluded that choosing the wrong entry points to effect change, the lack of effective policies and delivery of programs at too small a scale, all contributed to a lack of success. Arcaya and Figueroa ⁶⁷ discussed several factors that have contributed to increasing inequity in the U.S.; these included increasing consolidation of power and control of resources by privileged groups and increasing environmental hazards. As Arcaya et al. ² conclude there are most probably complex interactions of contextual (higher level) factors and compositional (individual factors) that contribute to health inequalities across groups.

What is known, however, is that individuals in vulnerable populations are often the least able to take advantage of health programs aimed at the population level. One example of this is the inequality in access to preventive health measures experienced by people with IDD. ⁶⁸ For example, as already discussed in this article, people with IDD experience poor access to population level screening measures. ²⁴ In addition, during COVID-19 people with IDD encountered difficulties in access to vaccines offered at the population level and were omitted from guidelines prioritizing vaccinations despite evidence of their increased vulnerability. ⁶⁹ Therefore health policies and health services that directly address the health of vulnerable groups are particularly important for people with IDD.

Meta-narrative #3 economics and economic growth as a motivator

The third meta-narrative negatively affecting people with IDD is found within a primary driver of health policy; that is the assumption that economic growth is the primary motivation for governments to reduce social gradients of health. Within health policy documents in the UK, Smith ³⁷ demonstrated that ‘there is an assumption that national economic growth provides an incentive for reducing health inequalities and/or improving health, and there is a notable absence of references to other reasons that it might be desirable to reduce health inequalities (e.g., for ethical, human rights based or democratic reasons)’ (p. 126).

There are many examples of this narrative. ⁷⁰ The Executive Summary of the 2008 report of Canada's Chief Public Health Officer stated that ‘Our goal is to be healthy as long as possible. Although it is important to focus on the number of extra months or years we might gain, it is even more critical to reduce the number of those years that we are ill or disabled.’ The Executive Summary goes on to state that less healthy or disabled people put pressure on health and welfare systems and increase costs for taxpayers. The Statement concludes ‘Healthy people contribute to healthy economies.’ ⁷¹ Similarly the 2014 World Health Organization report on public health stresses that investment in public health contributes to national economic growth. ⁷² A report by the Committee on Community-Based Solutions to Promote Health Equity in the United States stated that ‘The economic effects of health inequity are the result of both unsustainable and wasteful health care spending and diminished productivity in the business sector.’ ^{4 (p. 40)}

The emphasis on the importance of the economic benefits of reducing health inequities also appears in the disability literature. In the foreword to the 2021 edition of Public Health Perspective on Disability, Klein states that disabled people should be included in community in order to contribute to a productive and successful U.S. economy. ⁷³

However, this emphasis on people as commodities and the economic benefits of improving population health and reducing health inequities is difficult to relate to people with IDD, due to their low employment rate and to assumptions about their un-employability. ⁷⁴ Writing about disability and public health research, Berghs et al. ⁷⁵ concluded that most research views disability in terms of burden or economic cost. Cultural norms stressing the importance of independence and individualism coupled with capitalist policies of as little government control as possible, contribute to inequality.^76,77 As Parmenter ^{76 (p. 287)} claims: ‘The materialization mantra is sapping the lifeblood of those elements that build social cohesion and a sense of mutual obligation toward one's fellow citizens, especially those who are marginalized and relatively powerless.’ This cultural narrative is evident in the discussions regarding prioritizing and rationing of medical care occurring during the COVID-19 pandemic^46,47 and discussed previously in this paper.

Discussion and recommendations

Both the medical model and the population health model fail to support the needs of people with IDD. The medical model presents disabled people as individual problems while ignoring effects of the social environment upon the experience of disability, positive aspects of disability and disability pride. ⁷⁸ Much of the approach taken by the population health model aims to prevent disability, ⁷⁹ and does not support access to population health measures for disabled people. Policies based upon the economic benefits of health discount disabled people as drains upon the overall economy.

Taken together, these three meta-narratives contribute to the exclusion of people with IDD from an equitable and effective healthcare system, a situation exacerbated during the COVID-19 pandemic. Given the dysfunctional situation produced by these narratives, how can disability activists, researchers and policy makers work towards a reduction in the socially constructed health inequalities experienced by those who have IDD? We suggest that an approach to this problem should account for the following four elements.

The health of disabled people can no longer be viewed as primarily a medical problem. The health of those with IDD is the result of complex interactions between individual characteristics, social determinants of health and societal attitudes and biases.

Public health strategies must include interventions both at the population level and programs targeted to vulnerable populations.^59,60,62,80 Basic needs such as personal assistance, counseling, adapted housing, special equipment and inclusive education must be met before disabled people can experience equality and inclusion. ⁸¹

To address systemic inequity, health research and policy development must also move beyond a focus on people with disabilities and their families as individual embodied problems. Characterizing disabled people as an economic burden reinforces disability as a difference or ‘problem’, rather than a universal phenomenon, which the majority of people will experience in their lifetime. ⁸²

Another element central to improving health care and health care policy for people with IDD is their inclusion in population health surveillance and research. ⁷⁴ As Braveman ⁶¹ stressed monitoring is critical to the development of policies. Currently, population health research rarely includes people with IDD and their families. Compounding the lack of current research is the lack of population level data on the prevalence of IDD. ⁸³ The factors responsible for this lack include stigma, ⁸⁴ problems with access, questions about informed consent, appropriate wording and design of surveys, ⁶⁶ sampling issues ⁷⁴ and difficulties measuring health. ⁷⁴ However, these problems all stem from a lack of interest and will on the part of researchers and government organizations

The adoption of these four elements would accomplish two goals: focus work on reducing healthcare inequities and ensure that people who have IDD are included in health research and policy development. Our recommendations are not founded on some kind of trickle-down effect, where improvement in the health of the general population gradually improves the health of those with IDD. At the same time, our recommendations are not strictly a targeted health program for a specific population, instead, we are proposing public health policy for the whole population, including people who have intellectual/developmental disabilities. What we are advocating is intentionally including people with IDD in all health policy and health programs and using the health of people with IDD as one indicator of health equity of the entire population. This proposal echoes that of Longmore ^{85 (p. 222)} who wrote that values drawn from disability experience ‘prize not self-sufficiency but self-determination, not independence but interdependence, not functional separateness but personal connection, not physical autonomy but human community. This values formation takes disability as the starting point. It uses disability experience as the source of values and norms’. Longmore ⁸⁵ maintained that current cultural values of hyper-individualism and independence found in the medical model are destructive for everyone, not only for disabled people and that by focusing on disability-based values human connection and community can be enhanced.

Conclusion

COVID-19 has underlined existing inequities in healthcare. People with IDD are one of the groups most vulnerable to these inequities. This vulnerability is a product of disability specific health issues, co-morbidities, social determinants of health and cultural norms that stigmatize disabled people. Health inequities experienced by people with IDD are exacerbated by three current meta-narratives that shape health policy: the medical model of disability, population health approaches and health policies based upon assumptions about economic growth. These meta-narratives cause harm to people with IDD. The authors have outlined specific actions to address these meta-narratives and health inequities. However, the essential first step is to bring awareness of these meta-narratives to educators, researchers, healthcare providers and governments so that they can address their role in perpetuating health inequities.