February 3, 2023
Paul Cotton, Ph.D., RDN.
Director, Office of Extramural Research Activities
National Institute on Minority Health and Health Disparities National Institutes of Health
Bethesda, MD 20892
Re: National Advisory Council on Minority Health and Health Disparities (NACMHD) Working Group Presentation
Dear Dr. Cotton:
Foremost, thank you for the opportunity for the National Council on Disability (NCD) to brief the esteemed members of NACMHD Working Group on December 13, 2022, and assist in its task to evaluate the risks and benefits of designating people with disabilities as a health disparity population.
Below, we provide a summary of the salient points of our presentation, and as requested, we provide additional information relating to bias and stigma, and attached to the email transmitting this letter is a copy of the presentation deck that we used for that presentation.
To reemphasize the salient points of our presentation:
- the designation of people with disabilities as a health disparity population under the Minority Health and Health Disparities Research and Education Act of 2000, is one of the core components of NCD's Health Equity Framework, which we released last February. When we look at the statutory definition of a health disparities population1 – to us, it is inarguable that people with disabilities fall clearly within the definition given the significant disparity in the overall rate of disease incidence, prevalence, morbidity and mortality as compared to our nondisabled counterparts;
- NCD’s December 7, 2021 letter to Director Perez-Stáble and Director Meyers of the Agency for Healthcare Research and Quality identified the well-developed body of studies and reports that document the continuing prevalence of health disparities between the now over 64 million people with disabilities and their nondisabled counterparts, citing to 37 peer reviewed studies between 2011 and 2020.2 Those studies highlight the disparities in the incidence, prevalence, morbidity, mortality and survival rates related to cancer, diabetes, heart disease, obesity, hypertension, kidney and liver conditions, and chronic illness, in addition to identifying persons with disabilities as likely to experience co-occurring disabilities like mental illness, physical disability, sensory disability. Those cited studies also document disparities between people with disabilities and their non- disabled counterparts in accessing healthcare services, like maternity care, routine healthcare services, dental care and preventive care and screenings; and further document that people with disabilities have significantly higher odds ratios for physical inactivity and smoking and face physical access barriers to healthcare. The mountain of empirical evidence gives voice to the continuous struggles that people with disabilities are experiencing in receiving even basic healthcare and shows the significant health disparities between persons with disabilities and those without;
- this past October, Health Affairs, dedicated the entirety of its journal to highlight significant health disparities between people with disabilities and those without. Those studies reiterated findings from the prior decade. For example: a study titled Perinatal Health Risks And Outcomes Among US Women With Self- Reported Disability, 2011–19, revealed that women with disabilities experience elevated risk for adverse pregnancy outcomes. Researchers analyzed data, including self-reported disability status, from the National Survey of Family Growth for the period 2011–19. They compared respondents with and without disabilities on these characteristics: smoking during pregnancy, delayed prenatal care, preterm birth, and low birthweight. A total of 19.5 percent of respondents who had given birth reported a disability, which is a much higher prevalence than estimates reported in US studies using diagnosis codes. Respondents with disabilities were twice as likely as those without disabilities to have smoked during pregnancy (19.0 percent versus 8.9 percent). They also had 24 percent and 29 percent higher risk for preterm birth and low birthweight, respectively;
- another October Health Affairs study, Advancing Health Equity And Reducing Health Disparities For People With Disabilities In The United States, found people with disabilities are more likely to report poor health and experience higher rates of chronic health conditions than nondisabled people. Data published in 2012 and 2015 indicate that disabled adults were more likely to experience chronic conditions such as cardiac disease, diabetes, higher weight, and asthma and to lack emotional support. That same study found that disabled women are more likely than their nondisabled peers to have chronic health conditions and to describe their general health as fair or poor. Women with disabilities have lower rates of breast and cervical cancer screening compared with nondisabled women, and disabled women with circulatory or respiratory conditions have higher rates of breast cancer mortality than women without disabilities;
- the COVID-19 pandemic shone a light on those significant disparities and our country’s decades-long inattention to the healthcare needs of people with disabilities. It is not that disability per se is a predictor of contracting COVID-19 virus, it is the secondary conditions not related to disability that place us at greater risk for contracting the virus and in a higher risk for severe outcomes including death. Comorbidities are a serious health concern because the presence of two or more conditions increases the chances of hospitalization and the risk of death and affects quality of life. When a person experiences comorbid conditions, they may have a compromised immune system or need additional care that exposes them to others. This was particularly true for persons with intellectual and developmental disabilities. The historical inattention to care treatment and the resulting health disparities, placed people with disabilities at great risk and weakened our resiliency to fight back against the virus;
- we noted the working group’s task was to evaluate risks and benefits of designating people with disabilities as a health disparities population. And the fundamental question that we had was, respectfully, thru what lens? How do individual committee members view disability and persons with disabilities? Is it through the historic and dominant social construct of the medical model of disability, which defines disability as an impairment or problem existing within the body or mind that can be identified by objective scientific or expert observations and ameliorated with the guidance or treatment of experts to help the person adapt and conform to the “normal” environment? A construct that views us as incapable of contributing to society. Or is it through the construct of the social model of disability? A model that challenges the medical model’s definition identifying disabled people as defective and disabled lives as inherently inferior to nondisabled lives. From a social model perspective, disability occurs when a person with an impairment interacts with physical or social environments that do not take the full range of human body variation into consideration and are unaccommodating or hostile as a result. In the social model, disability is a social construct, and disabled people are an oppressed minority group with unique histories and perspectives;
- we asked the foregoing questions because we know that how physicians see us is how they treat us. We have seen the research relating to black and brown persons in the country that clearly states that racism is a serious threat to public health.3 Studies that led to acknowledging proclamations by the American
- more importantly, we further noted the same prevalence of conditions that was the impetus for the creation of the National Institute of Minority Health to address health disparities affecting racial and ethnic minority groups - are the same that are identified as contributing to significant disparities for our community. Those conditions were detailed in the Institute of Medicine’s 2003 seminal report, “Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care.” 4 The Institute of Medicine then found, in the last twenty years, the literature had highlighted the fact that racial and ethnic disparities occur not only in health, but also in health care, and that many sources, including health care systems, health care providers, patients and utilization managers, are contributors – as is the case for people with disabilities;
- we cited recent studies by one of NCD’s dream team advisors in the formulation of our Health Equity Framework, Dr. Lisa Iezzoni, with Harvard Medical School, and her colleagues, published in Health Affairs. The first, in February 2021, found that over 82% physicians nationwide view people with significant disabilities as having a low quality of life.5 And an October 2022 follow-up study conducted by Dr. Iezzoni and her colleagues also published in Health Affairs revealing conversations with physicians under the cloak of anonymity wherein they revealed their preference not to treat us; admitting sending us to cattle processing plants, supermarkets, zoos and grain elevator facilities to get weighed; and telling us their practices are closed and not accepting new patients, when in fact they are open and accepting new patients, but not those with disabilities;6 and
- we expressed our hope that the task of this working group would be not to focus on risks and benefits, because that seems to be clear. The absence of the health disparity population designation perpetuates the suffering and death within our community, a community of over 64.3 million people as of last year according to the CDC. The benefits lie in preventable deaths, millions of reduced hospitalizations, and a healthier population that comprises over 26% of the total population in this country. The designation will allow us to truly live independent lives, seek and maintain gainful employment, and improve the overall quality of our lives.
With respect to data relating to physicians’ bias and stigma towards people with disabilities, consider:
- the 2019–20 national survey finding that 82.4 percent of out-patient physicians reported that people with significant disability have worse quality of life than nondisabled people, and only 40.7 percent were very confident that they could provide the same quality of care to patients with disability as to their nondisabled patients.7
- the 2020 study examining results from 25,0006 physicians’ implicit association tests, finding that although health care professionals across disciplines self- reported little explicit prejudice against disabled people, their implicit attitudes revealed ableist bias.8
- A 2004 qualitative study of people who were deaf or hard of hearing identified clinicians may believe that people with hearing loss have low intelligence and disrespect their perspectives.9
Moreover, in 2019, we published a five-part series on biomedical ethics and discrimination against people with disabilities. The three most relevant are:
- Organ Transplant Discrimination Against People with Disabilities: People with disabilities are often denied equal access to organ transplants solely on the basis of their disability. Additionally, the report explores how people with disabilities and their families can be pressured into organ donation;10
- Medical Futility: Health care providers’ subjective judgments about whether a patient’s life is “worth living” often influences their decisions regarding whether to withdraw or withhold medical care. Several studies have demonstrated that health care providers’ opinions about the quality of life of a person with a disability significantly differ from the actual experiences of those people. For example, one study found that only 17 percent of providers anticipated an average or better quality of life after a spinal cord injury (SCI) compared with 86 percent of the actual SCI comparison group. The same study found that only 18 percent of emergency care providers imagined that they would be glad to be alive after experiencing a spinal cord injury, in contrast to the 92 percent of actual SCI survivors;11 and
- The Danger of Assisted Suicide Laws: Physician’s attitudes and belief that the quality of life of people with disabilities is low poses the danger of referral to assisted suicide more quickly and easily than referral for patients without pre- existing disabilities. People with disabilities can be referred to assisted suicide rather than mental health counseling for suicide ideation.12
We saw early on during the start of the pandemic and continuing throughout its height, systemic Ableism by public health officials in many jurisdictions throughout the country that blatantly discriminated against people with disabilities from receiving care and treatment for the COVID-9 virus. It prompted us to write to the Director of the HHS Office of Civil Rights (OCR), urging OCR to take action to prevent medical discrimination against people with disabilities who contract the coronavirus.13
We hope that you and the Working Group find the above helpful. If we can be of any further assistance as you continue this important work, please reach out to us.
Andrés J. Gallegos, J.D.
1 42 U.S.C.A. § 285t(1) (West) A population is a health disparity population if, as determined by the Director of the Institute after consultation with the Director of the Agency for Healthcare Research and Quality, there is a significant disparity in the overall rate of disease incidence, prevalence, morbidity, mortality, or survival rates in the population as compared to the health status of the general population.
2 Studies cited, included: Agaronnik, N.D., El-Jawahri, A. & Iezzoni, L.I. Perspectives of Patients with Pre- existing Mobility Disability on the Process of Diagnosing Their Cancer. J GEN INTERN MED 36, 1250– 1257 (2021). https://doi.org/10.1007/s11606-020-06327-7; Jean P. Hall, Noelle K. Kurth; A Comparison of Health Disparities Among Americans With Intellectual Disability and/or Autism Spectrum Disorder and Americans With Other Disabilities. Inclusion 1 September 2019; 7 (3): 160–168.
doi: https://doi.org/10.1352/2326-6988-7.3.160; H. Stephen Kaye, 2019: Disability-Related Disparities in Access to Health Care Before (2008–2010) and After (2015–2017) the Affordable Care Act. American Journal of Public Health 109, 1015 – 1021, https://doi.org/10.2105/AJPH.2019.305056; Yee, Breslin, et al., Compounded Disparities:
Health Equity at the Intersection of Disability, Race, and Ethnicity, National Academies of Sciences, Engineering, Medicine, published April 13, 2018. http://nationalacademies.org/hmd/Activities/SelectPops/HealthDisparities/Commissioned- Papers/Compounded-Disparities.aspx. Citing Centers for Disease Control and Prevention. Disability and Obesity. http://www.cdc.gov/ncbddd/disabilityandhealth/obesity.html. Accessed August 17, 2016; Krahn GL., et al., Persons with disabilities as an unrecognized health disparity population. Am J Public Health. 2015; 105:S198-206. doi:10.2105/AJPH.2014.302182; Mitra M., et al., Barriers to providing maternity care to women with physical disabilities: Perspectives from health care practitioners, Disability and Health Journal 10 (2017) 445-450. Available at https://www.disabilityandhealthjnl.com/article/S1936- 6574(16)30196-0/fulltext; Healthcare utilization and associated barriers experienced by wheelchair users: A pilot study Stillman MD, et al., Healthcare utilization and associated barriers experienced by wheelchair users: A pilot study, Disability and Health Journal (2017), http://dx.doi.org/10.1016/j.dhjo.2017.02.003; See Elham Mahmoudi, Ph.D., M.S., et al., Disparities in access to health care among adults with physical disabilities: Analysis of a representative national sample for a ten-year period, Disability and Health Journal 8 (2015) 182-190, www.disabilityandhealthjnl.com; Havercamp, S. M., & Scott, H. M.
(2015). National health surveillance of adults with disabilities, adults with intellectual and developmental disabilities, and adults with no disabilities. Disability and Health Journal, 8(2), 165–172; Healthy People 2020: disability and health. Washington, DC: Office of Disease Prevention and Health Promotion (http://www .healthypeople.gov/2020/topics-objectives/ topic/disability-and-health). It’s important to note HHS has been attempting to address this identical problem for decades. In 2000 when it released its Healthy People 2010 from the U.S. Department of Health and Human Services, cautioned that "as a potentially underserved group, people with disabilities would be expected to experience disadvantages in health and well-being compared with the general population." See HHS U.S. Healthy People 2010.
Second Edition, Understanding and Improving Health and Objectives for Improving Health. Second Edition ed. Washington, D.C.: U.S. Government Printing Office; 2000; Key Findings: Persons with Disabilities as an Unrecognized Health Disparity Population. Centers for Disease Control and Prevention. March 31, 2015. http://medbox.iiab.me/modules/en- cdc/www.cdc.gov////ncbddd/disabilityandhealth/features/unrecognizedpopulation.html; Iezzoni LI, Yu J, Wint AJ, Smeltzer SC, Ecker JL. General health, health conditions, and current pregnancy among U.S. women with and without chronic physical disabilities. Disabil Health J. 2014;7(2):181-188. doi:10.1016/j.dhjo.2013.12.002; 2013 National Healthcare Disparities Report. AHRQ publication no. 14- 0006. Rockville, MD: Agency for Healthcare Research and Quality, May 2014
(http://www .ahrq.gov/research/findings/nhqrdr/nhdr13/ 2013nhdr.pdf ); Pharr, J. R., Bungum, T. J. (2012). Health Disparities Experienced by People with Disabilities in the US: A Behavioral Risk Factor
Surveillance System Study. Global Journal of Health Science, 4(6), 99-108. https://digitalscholarship.unlv.edu/env_occ_health_fac_articles/62; See A. Reichard, Ph.D. et al., Health Disparities among Adults with Physical Disabilities or Cognitive Limitations Compared to Individuals with No Disabilities in the United States. Disability and Health Journal, Vol. 4, Issue 4, October 2011, pp. 59-67. Available at http://www.disabilityandhealthjnl.com/.; Id., at p. 65. “Not only were the screening rates worse than the ‘‘no disability’’ group, the rates at which each group received preventive cancer screenings and dental care was far below accepted standards of care suggested by the U.S. Preventive Services Task Force and the American Dental Association (even though most people with disabilities have a primary care source); Centers for Disease Control and Prevention (CDC). Current Cigarette Smoking among Adults—United States, 2011. Morb. Mortal. Wkly. Rep. 2012, 61, 889–894; Centers for Disease Control and Prevention (CDC). People with Disabilities and High Blood Pressure. February 2015. Available online: https://www.cdc.gov/ncbddd/disabilityandhealth/features/high-blood- pressure.html; Agency for Healthcare Research and Quality. 2009 & 2010 National Healthcare Disparities Report. Vol AHRQ Publication No. 10-0004 & 10-0005 Rockville, MD: U.S. Department of Health and Human Services; 2010, 2011; Andriacchi R., Primary care for persons with disabilities: the internal medicine perspective. Am J Phys Med Rehabil. 1997;76(3 Suppl):S17-20; Iezzoni L, Blocked. Health Aff (Millwood). 2008;27(1):203-209. doi: 10.1377/hlthaff.27.1.203; Kirschner K, et al., Structural impairments that limit access to health care for patients with disabilities. JAMA. 2007;297(10):1121-1125; Altman B, Bernstein A. Disability and Health in the United States, 2001-2005. Hyattsville, MD: National Center for Health Statistics; 2008. Available at https://www.cdc.gov/nchs/data/misc/disability2001- 2005.pdf; Drainoni M, et al., Cross-Disability experience of barriers to health-care access: Consumer perspectives. Journal of Disability Policy Studies. 2006;17(2):101-115; Iezzoni L, et al., Physical access barriers to care for diagnosis and treatment of breast cancer among women with mobility impairments.
Oncology Nursing Forum. 2010;37(6):711-717; Iezzoni L, et al., Rural residents with disabilities confront substantial barriers to obtaining primary care. Health Serv Res. 2006;41(4 Pt 1):1258-1275; Iezzoni L, et al., More than Ramps. A Guide to Improving Health Care Quality and Access for People with Disabilities. New York: Oxford University Press; 2006; Iezzoni L, et al., Implications of mobility impairment on the diagnosis and treatment of breast cancer. Journal of Women's Health. 2011;20(1):45-52; Kroll T, et
al., Barriers and strategies affecting the utilisation of primary preventive services for people with physical disabilities: A qualitative inquiry. Health Soc Care Community. 2006;14(4):284-293; Lishner DM, et
al., Access to primary health care among persons with disabilities in rural areas: A summary of the literature. J Rural Health. 1996;12(1):45-5; Mele N, et al., Access to breast cancer screening services for women with disabilities. J Obstet Gynecol Neonatal Nurs. 2005;34(4):453-464; Morrison EH, et
al., Primary care for adults with physical disabilities: Perceptions from consumer and provider focus groups. Fam Med. 2008;40(9):645-651; Scheer JM, et al., Access barriers for persons with disabilities:
The consumer's perspective. J Disabil Policy Stud. 2003;14(4):221-230; Smeltzer SC, et
al., Perspectives of women with disabilities on reaching those who are hard to reach. J Neurosci Nurs. 2007;39(3):163-171; Story MF, et al., Perspectives of patients with disabilities on the accessibility of medical equipment: Examination tables, imaging equipment, medical chairs, and weight scales. Disabil Health J. 2009;2(4):169-179.e1.; Bachman SS, et al., Provider perceptions of their capacity to offer accessible health care for people with disabilities. J Disabil Policy Stud. 2006;17(3):130-136; Centers for Disease Control and Prevention. Environmental barriers to health care among persons with disabilities, Los Angeles county, California, 2002-2003. Morbidity and Mortality Weekly Report. 2006;55(48):1300- 1303; Mudrick N, et al., Physical accessibility in primary health care settings: Results from California on- site reviews. Disabil Health J. 2012;5(3):159-167; Lagu T, et al., Access to subspecialty care for patients with mobility impairment: A survey. Ann Intern Med. 2013;158(6):441-446; Iezzoni LI, Ngo LH, Li D, Roetzheim RG, Drews RE, McCarthy EP. Early stage breast cancer treatments for younger Medicare beneficiaries with different disabilities. Health Serv Res. 2008 Oct;43(5 Pt 1):1752-67. doi: 10.1111/j.1475-6773.2008.00853.x. Epub 2008 May 12. PMID: 18479411; PMCID: PMC2653883.
3 See, e.g., Institute of Medicine. 2003. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Washington, DC: The National Academies Press. https://doi.org/10.17226/10260; Danielson, B., Confronting Racism in Pediatric Care, no2022 41:11, 1681-1685, available at https://www.healthaffairs.org/action/showCitFormats?doi=10.1377%2Fhlthaff.2022.01157&mobileUi=0; Parolin, Z. and Lee, E., The role of poverty and racial discrimination in exacerbating the health consequences of COVID-19, The Lancet Regional Health - Americas 2022;7: 100178 Published online 7 Medical Association in 2020, and the Center for Disease Control and Prevention in 2021; January 2022 https://doi.org/10.1016/j. lana.2021.100178. Available at https://www.thelancet.com/action/showPdf?pii=S2667-193X%2821%2900174-5. See also a series of articles called Racism, xenophobia, discrimination, and health, published in 2022 in The Lancet point to the presence of discrimination in healthcare, which can cause avoidable disease and premature death among groups of people who are often already disadvantaged.
4 Institute of Medicine. 2003. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Washington, DC: The National Academies Press. https://doi.org/10.17226/10260.
5 Iezzoni, L., Rao, S., Ressalam, J., et al., Physicians’ Perceptions Of People With Disability And Their Health Care, Health Affairs 2021 40:2, 297-306. Available at: https://www.healthaffairs.org/doi/abs/10.1377/hlthaff.2020.01452.
6 Lagu, T, Haywood, C, Reimold, K, DeJong, C, Sterling, R, and Iezzoni, L, ‘I Am Not The Doctor For You’: Physicians’ Attitudes About Caring For People With Disabilities, Health Affairs 2022 41:10, 1387- 1395. Available at: https://www.healthaffairs.org/action/showCitFormats?doi=10.1377%2Fhlthaff.2022.00475
7 Iezzoni, L., et al., Physicians’ Perceptions Of People With Disability And Their Health Care, Health Affairs 2021 40:2, 297-306. Available at: https://www.healthaffairs.org/doi/abs/10.1377/hlthaff.2020.01452
8 VanPuymbrouck L, Friedman C, Feldner H. Explicit and implicit disability attitudes of healthcare providers. Rehabil Psychol. 2020;65(2):101–12. Available at: https://pubmed.ncbi.nlm.nih.gov/32105109/
9 Iezzoni L., O’Day BL, Killeen M,Harker H. Communicating about health care: observations from persons who are deaf or hard of hearing. Ann Intern Med. 2004;140(5):356–62.
10 Available at: https://ncd.gov/sites/default/files/NCD_Organ_Transplant_508.pdf; see also: NCD Letter to HHS and DOJ on Organ Transplants: https://ncd.gov/publications/2019/ncd-letter-hhs-and-doj-organ- transplants.
- News Article: People with autism and intellectual disabilities fight bias in transplants. https://www.washingtonpost.com/national/health-science/people- with-autism-intellectual-disabilities-fight-bias-in-transplants/2017/03/04/756ff5b8- feb2-11e6-8f41-ea6ed597e4ca_story.html
- 2016 letter from Congress members to the Department of Health and Human Services’ Office of Civil Rights (HHS OCR) asking OCR to issue guidance on organ transplant discrimination. People with an intellectual and/or developmental disability are too often denied life-saving organ transplants for no reason other than their disability. https://www.scribd.com/document/327914350/2016-10-12- Members-Letter-HHS-OCR-Organ-Transplant-Discrimination
- Diagnostic overshadowing among groups experiencing health disparities. The Joint Commission. The Sentinal Event Alert, Issue 65, June 22, 2022. “Diagnostic overshadowing is harm that comes from clinician cognitive bias contributes to health disparities and is of particular concern in groups experiencing health disparities, such as individuals with disabilities.” https://www.jointcommission.org/-/media/tjc/documents/resources/patient-safety- topics/sentinel-event/sea-65-diagnostic-overshadowing-6-16-22- final.pdfAdvancing Health Equity For People With Intellectual And Developmental Disabilities
- World Health Organization: Fact Sheet on Disability and Health. (2022) Health inequities arise from unfair conditions faced by persons with disabilities. Two highlighted factors are: Structural factors: Persons with disabilities experience ableism, stigma and discrimination in all facets of life, which affects their physical and mental health. Laws and policies may deny them the right to make their own decisions and allow a range of harmful practices in the health sector, such as forced sterilization, involuntary admission and treatment, and even institutionalization. Health system: Persons with disabilities face barriers in all aspects of the health system. For example, a lack of knowledge, negative attitudes, and discriminatory practices among healthcare workers; inaccessible health facilities and information; and lack of information or data collection and analysis on disability, all contribute to health inequities faced by this group. https://www.who.int/news-room/fact-sheets/detail/disability-and-health
- Identifying And Exploring Bias In Public Opinion On Scarce Resource Allocation During The COVID-19 Pandemic. Ari Ne’eman, Elizabeth Bell, Monica C. Schneider, and Dara Strolovitch. HEALTH AFFAIRS 41, NO. 10 (2022): 1513– 1522. Respondents were 5.5 percentage points less likely to allocate a ventilator to a patient with a disability than to a nondisabled patient. Disability bias was correlated with older age cohorts and higher education levels of respondents. These findings demonstrate the importance of bias mitigation and civil rights enforcement in health policy making, especially under conditions of scarcity. https://www.healthaffairs.org/doi/pdf/10.1377/hlthaff.2022.00504
- ICYMI: Developing Anti-Ableist Practices in Health Care. Stephen Lanzi. August 24th, 2022. Discussing a presentation by Dr. ErIn Andrews titled “Recognizing Ableism in Health Care Delivery and Developing Anti-Ableist Practices.” Dr. Andrews framed disability as a health disparity, or difference in health outcomes that results from historical disadvantages. “Ableism is often times perpetuated by some harmful attitudes toward patients with disabilities, and then that in turn contributes to discriminatory behavior and these adverse health outcomes that we see,” Andrews said. https://www.uab.edu/shp/home/news/cedhars- news/icymi-developing-anti-ableist-practices-in-health-care
- Disability and Ableism in Medicine: A Curriculum for Medical Students (2021). Hannah Borowsky, Leora Morinis, MA, Megha Garg, MD, MPH. Educational Objectives. By the end of this curriculum, learners will be able to: Discuss the meaning and manifestations of ableism in and beyond the health care context.; Identify the ways in which ableism contributes to health and health care disparities. https://www.mededportal.org/doi/10.15766/mep_2374-8265.11073
- Forced Sterilization of Disabled People in the United States. National Women’s Law Center. (2021). Some people think that forced sterilization only happened to people with disabilities in the past, but 31 states and the District of Colombia still have laws that allow forced sterilization today. https://nwlc.org/wp- content/uploads/2022/01/%C6%92.NWLC_SterilizationReport_2021.pdf
- Disability Bias in Health Care Unearthing the influence of bias on health care policies and clinical decision-making. Harvard Law School Project on Disability. Oct 20, 2021. Describes how various forms of disability bias can affect clinical practice. For example, "ineffectual bias" manifests when clinicians assume patients with disabilities possess lower levels agency and competence than non- disabled patients with the same presenting medical complaint and thus treat them paternalistically. "Fragility bias" arises when clinicians perceive that patients with disabilities suffer more than non-disabled patients who present with the same medical facts, which can lead to more conservative treatments. Conversely, "catastrophe bias" causes clinicians to project more suffering onto patients with disabilities than patients actually experience based on the clinicians' assumptions that patients' disabilities diminish their quality of life, inducing clinicians to “give up” sooner than they would for non-disabled patients. https://hpod.law.harvard.edu/news/entry/disability-bias-in-health-care
- Stop telling people with disabilities they might be better off dead. Ottowa Life Magazine. January 6, 2021. Experiences of people with disabilities with their physicians and care providers framed in context of an assisted suicide bill. https://www.ottawalife.com/article/stop-telling-people-with-disabilities-they-might- be-better-off-dead?c=13
- Healthy Aging and Physical Disability Rehabilitation Research and Training Center. Disability Stigma and Your Patients. (no date) Fact sheet for physicians on disability stigma; How disability stigma affects the doctor patient relationship; and tips for stigma-free interactions. https://agerrtc.washington.edu/info/factsheets/stigma
- JSTOR Daily. The Rise of Disability Stigma. Livia Gershon. October 9, 2020. Brief historical explanation on stigma about disability. https://daily.jstor.org/the- rise-of-disability-stigma/
- Most People Are Prejudiced Against People with Disabilities. The Council on Quality and Leadership. September 4, 2019. Results of a large-scale study with approximately 350,000 people to examine common modern forms of ableism. “The most common form of prejudice amongst the 350,000 people was aversive ableism, where they consciously had little prejudice but unconsciously were prejudiced against people with disabilities.” https://youtu.be/pyaDlpap6NQ?t=18
- Disability stigma: Causes, consequences, and strategies for change. Wang, K., & Ashburn-Nardo, L. (2019). In D. S. Dunn (Ed.), Understanding the experience of disability: Perspectives from social and rehabilitation psychology (pp. 11–23). Oxford University Press. Those with physical or psychological limitations continue to experience broad stigmatization on both interpersonal and structural levels. This chapter discusses how social psychological theories of stereotyping, prejudice, and discrimination can be applied to understand and address disability stigma. It begins by outlining existing evidence on the myriad, yet often subtle, ways in which disability stigma can be perpetuated by those without disabilities. The chapter reviews research on the experience of stigma from the perspective of people with disabilities. https://psycnet.apa.org/record/2019-54246-002
- Disability, vulnerability and assisted death: commentary on Tuffrey-Wijne, Curfs, Finlay and Hollins. Stainton, T. BMC Med Ethics 20, 89 (2019). Describes the negative valuation of disabled persons lives in society and in health care. https://bmcmedethics.biomedcentral.com/articles/10.1186/s12910-019-0426-2
- Ableism: the undiagnosed malady afflicting medicine. Janz HL. CMAJ. 2019 Apr 29;191(17). “Galli and colleagues observe that “[d]espite their intentions, personal goals and normative expectations, even health professionals are unconscious bearers of implicit social biases that affect the quality of professional interventions. They further contend that “[i]mmediately, and from early life and thereafter, people perceive individuals with disability as ‘vulnerable’ and of low competence, and, accordingly, treat members of this group differently.” Consequently, people with disabilities often continue to experience social devaluation on account of their disabilities (i.e., ableism), despite the fact that the last few decades have seen an increased awareness and a decreased social acceptability of discrimination based on other characteristics such as race (i.e., racism) and gender (i.e., sexism). People with disabilities thus remain subjected to ableist attitudes in many sectors, including — often especially — the health care system.” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6488478/
- The Harm of Ableism: Medical Error and Epistemic Injustice. David M. Peña- Guzmán et al. Kennedy Institute of Ethics Journal. Johns Hopkins University Press. Volume 29, Number 3, September 2019. This paper argues that epistemic errors rooted in group- or identity-based biases, especially those pertaining to disability, are undertheorized in the literature on medical error. After sketching dominant taxonomies of medical error, we turn to the field of social epistemology to understand the role that epistemic schemas play in contributing to medical errors that disproportionately affect patients from marginalized social groups. We examine the effects of this unequal distribution through a detailed case study of ableism. There are four primary mechanisms through which the epistemic schema of ableism distorts communication between nondisabled physicians and disabled patients: testimonial injustice, epistemic overconfidence, epistemic erasure, and epistemic derailing. Measures against epistemic injustices in general and against schema-based medical errors in particular are ultimately issues of justice that must be better addressed at all levels of health care practice.
- AMA Journal of Ethics, December 2018, Volume 20, Number 12: E1181-1187 MEDICINE AND SOCIETY. Three Things Clinicians Should Know About Disability, Joel Michael Reynolds, PhD. “Ableism undermines clinicians’ ability to engage with patients with disabilities as they in fact live their lives; it distorts communication with all patients regarding transitions into and experiences of various states of disability, whether due to age, injury, or other factors; and it misaligns the ultimate priorities of medical care insofar as it fosters an unreflective support of normalcy. In all these ways, ableism leads to worse care and increases the chances of harm. Ableism also contributes to a specific and persistent issue dogging medical communication: the ableist conflation of disability with disease, illness, pain, suffering, and disadvantage. To be disabled is not automatically or necessarily to suffer or be in pain or to have an illness or disease….Disability is in many respects as complex and contextual as any other significant facet of human identity such as race, ethnicity, sexuality, gender, and so on.” https://journalofethics.ama-assn.org/article/three-things-clinicians-sho... know-about-disability/2018- 12#:~:text=For%20shorthand%2C%20I%20refer%20to,disability%2C%20diseas e%2C%20and%20illness.
- Overcoming abelism in medical and nursing education: The Hastings Center (no date). Equitable health care for all is a bioethical imperative. And discrimination against people with disabilities—ableism—stands in the way of fulfilling that imperative. The disability community has been drawing attention to ableism in the health care system for decades, but the urgency of these problems has been exacerbated in recent years, as pandemic-related crisis standards of care threatened to deprioritize disabled lives and new research confirmed the pervasiveness of discriminatory attitudes toward disability among practicing physicians. https://www.thehastingscenter.org/news/overcoming-ableism-in- medical-and-nursing-education/
- Patients with Disabilities: Avoiding Unconscious Bias When Discussing Goals of Care. Clarissa Kripke, MD, FAAFP, Am Fam Physician. 2017;96(3):192-195. A case study about a how a doctor’s bias resulted in referring a man with a disability to hospice. When the decision was challenged, the patient was removed from hospice and made a full recovery. A discussion about why this happened and what needs to change. https://www.aafp.org/pubs/afp/issues/2017/0801/p192.html
- Devaluing People with Disabilities: Medical Procedures that Violate Civil Rights, David Carlson, Cindy Smith, Nachama Wilker, National Disability Rights Network and Disability Rights Washington p.40 (2012). Describes the existence of widespread discrimination against people with disabilities in the medical community when making treatment decisions. http://ndrn.org/images/Documents/Resources/Publications/Reports/Devaluing_P eople_with_Disabilities.pdf.
- Elizabeth Bouvia, Assisted Suicide and Social Prejudice. 3 Issues L. & Med. 141. Paul K. Longmore (1987-1988) “The most prominent and vigorous suicide rights activists seek legalization of assisted suicide not only for those who are terminally ill, but also for an array of other socially devalued and disadvantaged persons, most notably, people with disabilities and older people…A hidden but powerful component of any discussion about disabled people must be brought to the surface and addressed: the usually unacknowledged and unconscious fear and prejudice of many non handicapped persons towards people with disabilities. It involves bias against those who look different and function differently. It reflects hostility towards those who require and increasingly demand alternative physical and social arrangements to accommodate them, and in some cases need a larger share of societal resources. It stems from the frightened belief that disability inevitably means loss of control, social isolation, loss of an essential part of your humanity, and the related deep-seated anxiety that this could happen to me or someone close to me.” https://heinonline.org/HOL/LandingPage?handle=hein.journals/ilmed3&div=24&i d=&page=
- Urging the Handicapped to Die : Bouvia Decision Is Victory for Bigotry, Not Self- Determination. Paul K. Longmore. April 25, 1986. Discusses the disability bias of the examining doctors and judge who approved assisted suicide for a woman with cerebral palsy. Khttps://www.latimes.com/archives/la-xpm-1986-04-25-me- 1395-story.html
Additional relevant statements, letters, articles, studies and reports focused upon stigma and disability bias (Ableism) in healthcare to help further inform the Working Group, include:
- HHS Office for Civil Rights recognition of disability bias in organ transplant process:
- Organ Transplant Disability Bias Gets Second Look Under Trump: https://news.bloomberglaw.com/health-law-and-business/organ-transplant- disability-bias-gets-second-look-under-trump
- OCR Resolves Disability Complaint of Individual Who Was Denied the Opportunity for Heart Transplant List Placement https://public3.pagefreezer.com/browse/HHS.gov/31-12- 2020T08:51/https://www.hhs.gov/about/news/2019/02/12/ocr-resolves- disability-complaint-individual-who-was-denied-opportunity-heart-transplant- list.html
In addition, there are numerous reports, articles and studies that describe the pervasiveness and severity of that Ableism during the pandemic, to include:
- Urgent care: disability, pandemic, and the value of a life. PERSPECTIVES|THE ART OF MEDICINE| VOLUME 399, ISSUE 10323, P430-431, JANUARY 29, 2022. Rachel Adams. Describing the medical establishment’s devaluation of the lives of people with disabilities during the pandemic as evidenced by plans to target them for denial of life saving care. https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(22)00118- 0/fulltext
- Who Gets the Ventilator? Disability Discrimination in COVID-19 Medical- Rationing Protocols. Samuel R. Bagenstos. The Yale Law Journal, Volume 130. 27 May 2020. Discussion of bias against people with disabilities and triage standards that discriminate on the basis of disability in providing lifesaving care. https://www.yalelawjournal.org/forum/who-gets-the-ventilator
- State policies may send people with disabilities to the back of the line for ventilators: Policies in 25 states would ration care in ways disability advocates have denounced, a Center for Public Integrity analysis shows. Liz Whyte. Center for Public Integrity. April 8, 2020. https://publicintegrity.org/health/coronavirus- and-inequality/state-policies-may-send-people-with-disabilities-to-the-back-of- the-line-for-ventilators/
- Americans With Disabilities Are Terrified (April 3, 2020) https://www.theatlantic.com/politics/archive/2020/04/people-disabilities-worry- they-wont-get-treatment/609355/
13 NCD letter to Roger Severino, Director of HHS’ Office for Civil Rights. Available at: https://ncd.gov/publications/2020/ncd-covid-19-letter-hhs-ocrs.
- People With Disabilities Fear Pandemic Will Worsen Medical Biases. NPR. April 15, 2020. Article on medical bias against people with disabilities. https://www.npr.org/2020/04/15/828906002/people-with-disabilities-fear- pandemic-will-worsen-medical-biases
- Ventilators limited for the disabled? Rationing plans are slammed amid coronavirus crisis. NBC News. March 27, 2020. https://www.nbcnews.com/news/amp/ncna1170346
- Disability Discrimination, Medical Rationing and COVID-19. Chen B, McNamara DM. Asian Bioeth Rev. 2020 Sep 3;12(4):511-518. The current public health crisis has exposed deep cracks in social equality and justice for marginalized and vulnerable communities around the world. The reported rise in the number of ‘do not resuscitate’ orders being imposed on people with disabilities has caused particular concerns from a human rights perspective. While the evidence of this is contested, this article will consider the human rights implications at stake and the dangers associated with using ‘quality of life’ measures as determinant of care in medical decision-making and triage assessments. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7471485/
- COVID-19 and Disability-Based Discrimination in Health Care. American Bar Association. Elizabeth Pendo. May 22, 2020. People with disabilities, who can be particularly vulnerable to COVID-19, experience significant inequities in health and health care. One of the reasons for these inequities is persistent disability discrimination and negative bias in the provision of medical treatment. Although bias can be explicit or implicit, studies have consistently demonstrated that health care providers hold negative views of people with disabilities and fail to fully appreciate the value and quality of life with a disability. Disability advocates and organizations have raised serious concerns about the impact of triage policies that exclude, disadvantage, or otherwise discriminate on the basis of disability. Examples of problematic provisions include: categorical exclusions based on disability, such as intellectual or developmental disability; explicit or implicit quality-of-life assessments; assumptions regarding long-term survival that disadvantage people with disabilities; failure to incorporate reasonable modifications in receiving treatment, including allowing for longer time on a ventilator; provisions authorizing reallocation of ventilators from chronic ventilator users to other patients; assumptions or concerns about the ability of people with intellectual and developmental disorders to comply with post-treatment protocols; and overall failure to require an individual assessment of each patient to avoid decisions based on diagnoses and stereotypes. https://www.americanbar.org/groups/diversity/disabilityrights/resources/covid19- disability-discrimination/
- HHS OCR Reaches Early Case Resolution With Alabama After It Removes Discriminatory Ventilator Triaging Guidelines. Aril 8, 2020. The 2010 Criteria allegedly allowed for denying ventilator services to individuals based on the presence of intellectual disabilities. https://www.hhs.gov/about/news/2020/04/08/ocr-reaches-early-case-resolution- alabama-after-it-removes-discriminatory-ventilator-triaging.html.
- HHS OCR Issues Bulletin on Civil Rights Laws and HIPAA Flexibilities That Apply During the COVID-19. “OCR is particularly focused on ensuring that covered entities do not unlawfully discriminate against people with disabilities when making decisions about their treatment during the COVID-19 health care emergency. OCR enforces the Americans with Disabilities Act, Section 504 of the Rehabilitation Act, the Age Discrimination Act, and Section 1557 of the Affordable Care Act which prohibits discrimination in HHS funded health programs or activities. These laws, like other civil rights statutes OCR enforces, remain in effect. As such, persons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative “worth” based on the presence or absence of disabilities or age. Decisions by covered entities concerning whether an individual is a candidate for treatment should be based on an individualized assessment of the patient and his or her circumstances, based on the best available objective medical evidence.” https://public3.pagefreezer.com/content/HHS.gov/31-12- 020T08:51/https://www.hhs.gov/about/news/2020/03/28/ocr-issues-bulletin-on- civil-rights-laws-and-hipaa-flexibilities-that-apply-during-the-covid-19- emergency.html