Podcast: Lisa Meeks on ableism and treatment of physicians with
disabilities
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Tuesday, October 25, 2022 | The Latest Research, Commentary, And News
From Health Affairs

Dear John,

Today's newsletter is guest written by Ilhom Akobirshoev, a research
scientist at Brandeis University and featured author
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in this month's theme issue on Disability & Health
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COVID-19 Impact On People With Disabilities

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
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of Health Affairs, my coauthors and I published an article
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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
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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
<[link removed]>."

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
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or the recent A Health Podyssey episode where Lagu discusses the
findings
<[link removed]>.

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.

If you enjoyed reading today's guest takeover by Ilhom Akobirshoev,
consider becoming a Health Affairs Insider
<[link removed]>
to get access to curated newsletters on topics like health reform,
health spending, and more.

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Advertisement

Elsewhere At Health Affairs

In Forefront, Paul Ginsburg and Steven Lieberman argue that Congress
should address Medicare physician fees
<[link removed]>
during the "lame duck" session later this year.

Andrew Sudimack and Daniel Polsky discuss how persistent margin
pressures
<[link removed]>
will force hospitals to aggressively cut costs and how that might impact
patients.

A new report from America's Health Rankings revealed increasing mental
health needs among young people. To help better address these mental
health needs, we are partnering with Active Minds to launch a new
program in 50 school districts across Minnesota, North Carolina and
Florida. Learn more.

Sponsored by United Health Foundation
<[link removed]>

[link removed]


Lisa Meeks On Ableism And Treatment Of Physicians With Disabilities

Alan Weil interviews the University of Michigan's Lisa Meeks on a recent
paper exploring the topic of mistreatment of physicians with
disabilities.

Listen Here
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Daily Digest

Delayed Medical Care And Unmet Care Needs Due To The COVID-19 Pandemic
Among Adults With Disabilities In The US
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Ilhom Akobirshoev et al.

Multi-Year Medicare Physician Fee Freeze Threatens Access: Pair Relief
With Reforms
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Paul Ginsburg and Steven Lieberman

Inflation Is Squeezing Hospital Margins-What Happens Next?
<[link removed]>

Andrew Sudimack and Daniel Polsky

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mailto:[email protected]

About Health Affairs

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is available in print and online. Late-breaking content is also found
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Update <[link removed]>.  

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