My research focuses on disparities in health and health care outcomes among people with and without disabilities and intersectionality research based on race, ethnicity, and other social determinants of health.

In the Disability & Health theme issue of Health Affairs, my coauthors and I published an article where we examined the impact of the COVID-19 pandemic on delayed and unmet needs for medical care during the first year of the pandemic among noninstitutionalized adults with disabilities.

The COVID-19 pandemic had a devastating impact on people with disabilities.

It was tragic and gut-wrenching to see how institutions and health care systems again failed to protect the health and the lives of people with disabilities.

Initial reports suggested that almost half of all COVID-19-related deaths during 2020 were attributed to institutions where people with disabilities lived.

Other studies have indicated that the risk of death after contracting COVID-19 was as much as three times higher among people with disabilities and as much as six times higher among people with intellectual and developmental disabilities compared to nondisabled people.

This all happened despite the adoption of the Americans with Disabilities Act (ADA) in 1990 protecting people with disabilities against discrimination and a 1999 Supreme Court decision mandating states provide home and community-based services (HCBS) to persons with disabilities when such services are appropriate.

The latter was supposed to limit unnecessary institutionalization of people with disabilities and accelerate the deinstitutionalization process of those in the institutions. Alas, the process of deinstitutionalization was stagnant.

There are more than 665,000 people with disabilities in the Medicaid HCBS 1915(c) Section Waiver waiting list who prefer to get long-term care services and supports in their home or community rather than in an institutional setting.

We should ask many hard questions: How many lives could have been saved if not for the slow deinstitutionalization process? Why does public health information on the COVID-19 pandemic continue to be inaccessible for people with communication disabilities?

Unfortunately, despite all the protections under the ADA, decades of research have shown that compared to people without disabilities, people with disabilities disproportionately experience more difficulties accessing medical care and experience worse health outcomes.

To me, the health disparities that people with disabilities experience result from entrenched structural ableism, systemic discrimination, and explicit and implicit bias against people with disabilities within the US healthcare systems.

Some colleagues who contributed to the Disability & Health issue did an excellent job of providing evidence of such discrimination and bias.

I recommend that readers check out Tyler James and colleagues’ paper on "Communication Access In Mental Health And Substance Use Treatment Facilities For Deaf American Sign Language Users."

The authors find that 41 percent of mental health facilities and 59 percent of substance use treatment facilities receiving public funds reported not providing American Sign Language services to Deaf or hard-of-hearing people upon request, despite being mandated by Section 1557 of the ADA.

I would also point to the mind-blowing findings of Tara Lagu and her colleagues in their paper on physician attitudes, or the recent A Health Podyssey episode where Lagu discusses the findings.

Going back to our study, we found that during the COVID-19 pandemic people with disabilities were more likely to have delayed their medical care.

They were also more likely not to get the medical care they needed and not to get care at home from a health professional. One crucial finding we did not discuss much in our paper was the huge disparity in not receiving care at home from a health professional.

For example, people with physical disabilities and those with self-care disabilities are about 9 and 10 times more likely not to get care at home from a health professional. This has very important implications for the deinstitutionalization process.

First, people with long-term service and support needs are not getting the care they need to live at home.

And second, if need for home care remains unmet, people with disabilities will have a higher risk for otherwise preventable emergency department visits and hospitalizations. Unfortunately, they might also experience mortality during these episodes or be discharged to institutions.

Regarding policy actions, we do not want to reinvent the wheel.

We wholeheartedly second the National Council on Disability’s recommendations: To designate, legally, people with disabilities as a Special Medically Underserved Population (SMUP).

Rigorous research from newly established centers for research and training could help further identify barriers and the root causes of structural inequities affecting people with disabilities, informing policy and decision with specific action items at a whole new level.

Such designation will also require standardized indicators for disability, type of disability, and needed accommodation to systematically collect data on these indicators through all public health surveillance systems.

At present, disability indicators are nonexistent in critical real-time surveillance data, including the COVID-19 epidemic. Lack of disability data was mentioned by many as one of the significant barriers to disability-inclusive COVID-19 pandemic response planning.

We now know the solution and hope policy and the decision makers at all levels will act on it.

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