March 27, 2020
Roger Severino
Director, Office for Civil Rights
U.S. Department of Health & Human Services
200 Independence Avenue, S.W.
Washington DC 20201
RE: Complaint of Erin Brady Worsham, Jean Marie Lawrence, Toni Corbin, John and Pam Bryan,
Jennifer Aprea, Disability Rights Tennessee, the Tennessee Disability Coalition, The Arc
Tennessee, The Arc of the United States, Civil Rights Education and Enforcement Center,
Disability Rights Education and Defense Fund, Autistic Self Advocacy Network, Epilepsy
Foundation of Middle & West Tennessee, National Kidney Foundation, and National Multiple
Sclerosis Society
Dear Mr. Severino:
We are individuals with disabilities and disability rights organizations representing and
advocating for the rights of individuals with disabilities in Tennessee. 1 We include Disability
Rights Tennessee, the designated Protection & Advocacy agency for Tennessee. We write with
great urgency to alert you to Tennessee’s guidelines for rationing scarce resources during a
public health emergency. Those guidelines exclude people with disabilities from critical care,
including ventilators, in violation of the Americans with Disabilities Act (ADA), Section 504 of
the Rehabilitation Act (Section 504), and Section 1557 of the Affordable Care Act (Section
1557).
The ADA, Section 504, and Section 1557 cover the state of Tennessee and all Tennessee
hospitals, health care providers, health plans and insurers. As documents previously provided
to you and your office make clear,2 these federal laws prohibit disability discrimination in
medical decision-making. The attached complaint filed last week by Disability Rights
1

Please see our further descriptions at the end of this letter.
March 20, 2020 letter of the Consortium of Citizens with Disabilities, at http://www.c-c-d.org/fichiers/Letter-reCOVID-19-and-Disability-Discrimination-final.pdf; March 23, 2020 Disability Discrimination Complaint Filed Over
Covid-19 Treatment Rationing Plan in Washington State, at
https://www.disabilityrightswa.org/2020/03/23/disability-discrimination-complaint-filed-over-covid-19-treatmentrationing-plan-in-washington-state/, and attached hereto; Disability Rights Education and Defense Fund,
Preventing Discrimination in the Treatment of COVID-19 Patients: The Illegality of Medical Rationing on the Basis
of Disability, at https://dredf.org/the-illegality-of-medical-rationing-on-the-basis-of-disability/.
2

 Washington and others details these principles. Yet Tennessee’s 2016 “Guidelines for the
Ethical Allocation of Scarce Resources”3 permit and advise that, in the context of a crisis like
COVID-19, health care providers discriminate on the basis of disability in violation of federal
law.
Specifically, Tennessee’s guidelines exclude people with “advanced neuromuscular disease”
who require “assistance with activities of daily living or requiring chronic ventilatory support,”
from accessing critical care, including ventilators. They further exclude people with metastatic
cancer, some people with dementia, and some people with traumatic brain injury from
necessary care. The thousands of people who have the listed conditions in the guidelines are
not inherently less likely to respond to COVID-19 treatment or medically less capable of
surviving and returning to living productive and valued lives.
A diagnosis should not
determine anyone’s right to individual medical judgment or leave people afraid to seek
professional help because their care will be based on assumptions about a condition. As such,
these guidelines violate the federal disability rights laws outlined above.
As a result of these guidelines, and the message that they send about the worth and dignity of
people with disabilities, Tennesseans with significant disabilities are experiencing intense fear
and anxiety. People with disabilities fear that, should they need critical care or ventilators
during the COVID-19 crisis, they may be excluded and denied based on disability, and may even
face preventable death.
Erin Brady Worsham is an artist and writer.4 In 1994, she was diagnosed with amyotrophic
lateral sclerosis (ALS or Lou Gehrig’s Disease) and was given three years to live. Since that time,
Erin has not only continued living but has flourished. She and her family have lived in East
Nashville for 30 years and love it, and especially love the iconic Tomato Art Fest held in August.
She has participated in the Tomato Art Show since 2012 and was delighted to have her piece
“Revelation” win the 2019 Heirloom Award. Erin’s art has been seen in exhibits around the
United States, as well as in Canada and Australia. She operates the computer and composes
her pictures with a switch taped between her eyebrows. Each picture can take anywhere from
60 to 300 hours. Because Erin has ALS, is ventilator dependent, and is now also living with
metastatic cancer, Tennessee’s medical rationing guidelines exclude her from receiving COVID19 treatment. Erin adds, “I am a human being who happens to have a serious disability and I
deserve treatment like anyone else. This policy discriminates against those of us who have
already faced many challenges.”
Jean Marie Lawrence was born with Muscular Dystrophy. She is 33 years old and relies on a
ventilator for 12 to 20 hours a day. She works 40 hours a week, volunteers, and lives
independently. Because Jean Marie has Muscular Dystrophy and is ventilator dependent,
3

Tennessee Altered Standards of Care Workgroup, “Guidance for the Ethical Allocation of Scarce Resources during
a Community-Wide Public Health Emergency as Declared by the Governor of Tennessee” (July 2016), at
https://www.tn.gov/content/dam/tn/health/documents/2016_Guidance_for_the_Ethical_Allocation_of_Scarce_R
esources.pdf.
4
Erin’s full bio. is attached.

Page 2 of 7

 Tennessee’s medical rationing guidelines exclude her from receiving COVID-19 treatment. Jean
Marie shares, “Tennessee is saying my life is worth less than that of someone without my
disability. I fear not only for myself but also for the millions of other Tennesseans with
disabilities whose lives you may see as untraditional but are nonetheless worth every bit as
much as your own.”
Erin and Jean Marie’s stories are just two examples of Tennesseans with disabilities who are at
risk of being excluded from medical treatment and who, as a result, risk facing preventable
death. The stories of the other individual Complainants follow in the Further Description of
Complainants at the end of this letter. In passing the ADA, our nation promised to include
individuals with disabilities as equal members of our communities in all contexts, including this
one. We need your leadership to protect the rights of Erin, Jean Marie, John and Pam Bryan,
Jennifer Aprea and other Tennesseans with disabilities and their family members during this
crisis.
We request that OCR immediately investigate and resolve this complaint of disability
discrimination, and promptly detail what the state of Tennessee and Tennessee health care
providers must do to comply with federal laws protecting the rights of all patients, including
those with disabilities, during the COVID-19 pandemic. We need your guidance immediately,
given that the pandemic is spreading at a rapid pace and the number of confirmed cases and
deaths is climbing each day.
Please contact Lisa Primm or Sherry Wilds of Disability Rights Tennessee at 615.298.1080 ext.
118 or by email to lisap@disabilityrightstn.org and sherryw@disabilityrightstn.org with any
questions or responses to this complaint.
Sincerely,
Lisa Primm
Sherry Wilds
Disability Rights Tennessee

Carol Westlake
Donna DeStefano
Tennessee Disability Coalition

Carrie Hobbs Guiden
The Arc Tennessee

Shira Wakschlag
The Arc of the United States

Martie Lafferty
Civil Rights Education and Enforcement
Center

Claudia Center
Disability Rights Education and Defense Fund

Sam Crane
Autistic Self Advocacy Network

Jennifer Mathis
The Bazelon Center for Mental Health Law
Page 3 of 7

 Eliza Herzen
Epilepsy Foundation of Middle & West
Tennessee

Michelle Dicken, East and Middle Tennessee
Mable Barringer, West Tennessee
National Kidney Foundation
Samuel Bagenstos

Abby Emanuelson
National Multiple Sclerosis Society
Cathy Costanzo
Alison Barkoff
Center for Public Representation

Page 4 of 7

 Further Descriptions of Complainants
Individual Complainants
Erin Brady Worsham Erin’s story is included in the body of this letter. See also Erin’s attached
bio.
Jean Marie Lawrence Jean Marie’s story is included in the body of this letter.
Jennifer Aprea Jennifer’s son Ryan is 8 years old. He was born at 25 weeks and spent his first 7
months in the NICU. He had a hard time coming off oxygen and had pulmonary hypertension
secondary to his chronic lung disease. He has grown out of his lung issues and came off oxygen
at the age of 3. His remaining disabilities are: deafness, visual impairment, I/DD, and he was
recently diagnosed with autism. Jennifer’s biggest fear as a parent is that if Ryan were to
contract COVID-19 he could be one of the patients who would require a ventilator based on his
past history of lung issues. Jennifer fears that, because of his high needs and the fact that he’s
non-verbal and has multiple disabilities, Ryan would be excluded from life-saving measures.
Ryan is an eight-year-old child with his entire life ahead of him, and just knowing as a mother
that there is a policy in place that might require her to take Ryan home to watch him die has
increased Jennifer’s anxiety to a level that is inexplicable. Ryan already fought for 7 months in
the NICU to come home and live his life with his family. Ryan should not be denied the proper
medical treatment and chance to fight during this pandemic just because of his past medical
history and disabilities.
John and Pam Bryan Twenty-five years ago after a car crash, 13-year-old John Bryan was not
expected to survive. He sustained a severe traumatic brain injury (TBI) and spinal cord injury.
He did survive and even though his mother Pam was told he would never wake up, he
graduated from high school with a regular diploma four years later. Along with his TBI, John has
had Type 2 diabetes for 27 years. He also has many additional medical concerns. Two years ago,
doctors said there is nothing else they can do for John and did not expect him to make it for
another six months...but they were wrong again. John and his family have enjoyed and continue
to enjoy many good times together in the 25 plus years since the car crash. Life is good for John
and his family. John wants to be resuscitated if that is ever needed. Pam says, “Why should a
doctor who does not know John’s past or present make the decision of whether he
receives life-saving treatment based on his disability? The doctors have been wrong before,
they could be wrong again. Who's to know the answer but God.”
Toni Corbin Toni’s son Wallace is 42 years old. He has paralysis and a severe traumatic brain
injury. Wallace uses a Trilogy Ventilator when he sleeps. He was in the hospital about half a
dozen times last year and the hospital put him on a ventilator on several occasions. Due to his
disability and Tennessee’s guidelines, Toni is concerned that Wallace will not get a ventilator if
he is hospitalized with COVID-19.
Page 5 of 7

 Organizational Complainants
Disability Rights Tennessee is the designated Protection & Advocacy agency for residents of
Tennessee who have physical, mental, or developmental disabilities pursuant to the federal
protection and advocacy acts and state law.5 The Protection & Advocacy Systems were
mandated by the federal government in each state, district, commonwealth, territory, and the
Native American Nations in the four corners region to provide independent advocacy for people
with disabilities who are subjected to abuse, neglect, and serious rights violations.
The Tennessee Disability Coalition is an alliance of organizations and individuals joined to
promote the full and equal participation of people with disabilities in all aspects of life. We rely
on grassroots support from individuals and families across the state. The work of self-advocates
and small local groups is critical to the success of our combined goals. In addition to their
contributions, we have a formal membership of 47 organizations. The Coalition and its member
organizations represent Tennesseans of every age, economic background, political persuasion
and disability. Each organization is committed to collaboration toward improving the lives of all
Tennesseans who are touched by a disability.
The Arc Tennessee is a grassroots, non-profit, statewide advocacy organization for people with
intellectual and developmental disabilities and their families. Founded in 1952, The Arc
Tennessee is affiliated with The Arc United States and works collaboratively with local chapters
across Tennessee.
The Arc of the United States is the nation’s largest organization of and for people with
intellectual and developmental disabilities (I/DD). The Arc promotes and protects the human
and civil rights of people with I/DD and actively supports their full inclusion and participation in
the community. Included in The Arc’s chapter network of over 600 chapters nationwide is The
Arc Tennessee as well as fifteen local chapters throughout the state. The Arc has a vital interest
in ensuring that all individuals with I/DD receive the protections and supports to which they are
entitled by law. The organization has long worked to ensure that people with I/DD are
protected from discrimination in receiving medical care.
Civil Rights Education and Enforcement Center is a nonprofit membership organization whose
goal is to ensure that everyone can fully and independently participate in our nation’s civic life
without discrimination based on disability or other protected status. Our scope is nationwide
and we have offices in Colorado, California, and Tennessee. Through our Accessibility Project,
CREEC works to ensure that people with disabilities have equal access and opportunities.
The Disability Rights Education and Defense Fund is a national cross-disability law and policy
center that protects and advances the civil and human rights of people with disabilities through
5

Developmental Disabilities Assistance and Bill of Rights Act, 42 U.S.C. § 15041 et seq.; the Protection and
Advocacy for Individuals with Mental Illnesses Act, as amended, 42 U.S.C. § 10801, et seq.; the Protection and
Advocacy for Individual Rights Act, 29 U.S.C. § 794e; and RCW 71A.10.080.

Page 6 of 7

 legal advocacy, training, education, and development of legislation and public policy. We are
committed to increasing accessible and equally effective healthcare for people with disabilities
and eliminating persistent health disparities that affect the length and quality of their lives.
DREDF’s work is based on the knowledge that people with disabilities of varying racial and
ethnic backgrounds, ages, genders, and sexual orientations are fully capable of achieving selfsufficiency and contributing to their communities with access to needed services and supports
and the reasonable accommodations and modifications enshrined in U.S. law.
The Autistic Self Advocacy Network is a nonprofit organization run by and for autistic people.
ASAN was created to serve as a national grassroots disability rights organization for the autistic
community, advocating for systems change and ensuring that the voices of autistic people are
heard in policy debates and the halls of power. Our staff work to advance civil rights, support
self-advocacy in all its forms, and improve public perceptions of autism. ASAN’s members and
supporters include autistic adults and youth, cross-disability advocates, and non-autistic family
members, professionals, educators, and friends.
National Kidney Foundation is a lifeline for all people affected by kidney disease. As pioneers of
scientific research and innovation, NKF focuses on the whole patient through the lens of kidney
health. Relentless in our work, we enhance lives through action, education and accelerating
change.
National Multiple Sclerosis Society funds cutting-edge research, drives change through
advocacy, and provides programs and services to help people affected by MS live their best
lives. Multiple sclerosis is an unpredictable, often disabling disease of the central nervous
system. There is currently no cure for MS. Symptoms vary from person to person and range
from numbness and tingling, to mobility challenges, blindness and paralysis. An estimated 1
million people live with MS in the United States. Most people are diagnosed between the ages
of 20 and 50, and it affects women three times more than men.

Page 7 of 7

 ERIN BRADY WORSHAM…ARTIST ALWAYS!
Nashville artist and writer, Erin Brady Worsham, did not study art until she was 34.
A 1980 graduate of Western Kentucky University with majors in Theater and German,
Worsham spent some years on the road as a professional actress. She married fellow
actor Curry Worsham in 1987 and they settled in Nashville, TN. She enrolled in Watkins
Art Institute in 1991 and found her calling. Having grown up in Louisville, KY, with a
mother who was an artist, she was no stranger to art, but had never formally studied. At
Watkins she received a classical education in theory, technique and history.
Life changed dramatically for Worsham and her husband on Sept. 7, 1994, when she
received a diagnosis of amyotrophic lateral sclerosis (ALS or Lou Gehrig’s Disease) and
was given three years to live. She was just 36. All art stopped, but not all creating. Nine
months after the diagnosis, Worsham gave birth to the couple’s first and only child.
In the summer of 1999, Curry installed the software that would allow her communication
device to interface with their computer and move the mouse. Worsham began to reclaim
her art! She operates the computer and composes her pictures with a switch taped
between her eyebrows. Each picture can take anywhere from 60 to 300 hours. Her first
piece, “Big Wheels Keep on Turnin’,” was completed in May of 2000.
Since that time her work has been seen in exhibits around the United States, as well as in
Canada and Australia. Worsham’s first one-woman show, “Artist Always,” sponsored by
Vanderbilt University Hospital and the Society for the Arts in Healthcare, began touring
the country in 2003. In April of 2004, the show was on display in the Russell Rotunda in
Washington, D.C.
Worsham’s second one-woman show, “Artist’s Proof,” opened in March of 2007 at the
Tennessee Arts Commission and received favorable reviews. Her third one-woman
show, "Framed," opened at Studio East in East Nashville in November of 2010, in
response to the incredible community support following the foreclosure and subsequent
reinstatement of her family's home.

 Worsham has participated in disability arts festivals and exhibits around the world,
including kickstART! and kickstART2 in Vancouver, B.C., the High Beam Festival in
South Australia, the VSA International Arts Festival in Washington, D.C., the Chicago
Disability Arts and Culture Festival, the Survivor Art Foundation’s “Breaking the Walls
of Bias” Exhibit at the Hofstra Museum in New York and “The Artist’s Voice” Exhibit at
the Frist Center for the Visual Arts in Nashville, Tennessee.
Worsham was chosen to create the art for the 2015 poster and fine art giclee for the
National Center for Farmworker Health in Texas. An artist is chosen annually and the
posters and giclees are sold to raise money for scholarships. That same year, Worsham’s
piece, “I am the One,” was selected to be the program and t-shirt design for the 2015
Tennessee Disability Megaconference. Subsequently, her piece, “Put Your Heads
Together, People!,” was chosen to be the program and t-shirt design for the 2017
Tennessee Disability Megaconference.
Worsham’s work has garnered her several awards, including the 1999 MDA Personal
Achievement Award, the 2001 Jo Andrews Award (Metropolitan Nashville Government),
the 2003 Alumnae of the Year (Sacred Heart Academy, Louisville, KY), the 2004 Spirit
of da Vinci Award (Engineering Society of Detroit/National Multiple Sclerosis Society,
Michigan Chapter) and the 2005 Truth in Media Award (Tennessee Right to Life).
Using her communication device, Worsham has given talks on art and advocacy. She was
a featured speaker at the 2006 National Right to Life Convention and the 2007
Megaconference, both in Nashville. Over the years, Worsham has given many talks about
her art to the Partners in Policymaking classes, the most recent being to the Class of
2019. Partners in Policymaking is a state advocacy program for people with disabilities
and their families.
Worsham and her family have lived in East Nashville for 30 years and love it, and
especially love the iconic Tomato Art Fest held in August. She has participated in the
Tomato Art Show since 2012 and was delighted to have her piece “Revelation” win the
2019 Heirloom Award.
Challenges are not over for Worsham and her family. In September of 2018, Stage 3
cancer was discovered in her colon and removed. In February of 2020, it was confirmed
that cancer had returned and appears to have metastasized in her liver. With God’s help,
the fight goes on!

 March 23, 2020
Roger Severino
Director, Office for Civil Rights
U.S. Department of Health & Human Services
200 Independence Avenue, S.W.
Washington DC 20201
RE:

Complaint of Disability Rights Washington, Self Advocates in Leadership, The Arc
of the United States, and Ivanova Smith Against the Washington State
Department of Health (WA DOH), the Northwest Healthcare Response Network
(NHRN) and the University of Washington Medical Center (UWMC)

Dear Mr. Severino:
We are submitting this complaint about illegal disability discrimination that is putting the lives
of people with disabilities at imminent risk during the COVID-19 pandemic. As COVID-19 cases
increase, the experience in other countries and predictions of U.S. health officials is that there
will not be enough acute care services or equipment, such as ventilators, to meet the demand
of patients with the virus who require intensive treatment. Health care professionals in the
United States are already developing protocols for responding to COVID-19, including
treatment rationing that will determine who will and will not have access to life-saving
treatment. While we recognize the need to plan and be prepared for this potential reality
during these extraordinary times, the guiding principles that are adopted must be consistent
with federal civil rights law.
This complaint concerns the rationing scheme being put in place in Washington State, which
discriminates against people with disabilities in violation of federal disability rights laws,
including the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act
(Section 504), and Section 1557 of the Affordable Care Act (ACA). Washington’s rationing
scheme places the lives of disabled people at serious risk. It is critical that the Office for Civil
Rights (OCR) take immediate action to address this discrimination and assist covered entities in
developing non-discriminatory approaches before there are lethal consequences from the
application of these illegal policies.
The Washington State Department of Health (WA DOH) and the Northwest Healthcare
Response Network (NHRN), a coalition of hospitals, are developing a plan to ration health care
during the COVID-19 pandemic. “Washington state and hospital officials have been meeting to
consider what once was almost unthinkable — how to decide who lives and dies if, as feared,
the coronavirus pandemic overwhelms the state’s health care system.” 1 As described by the
Mike Carter, “‘It will not be pretty’: State preparing to make life-or-death decisions if coronavirus overwhelms
health care system,” Seattle Times (March 20, 2020), https://www.seattletimes.com/seattle-news/it-will-not-bepretty-state-preparing-to-make-life-or-death-decisions-if-coronavirus-overwhelms-health-care-system/
1

 Roger Severino
Complaint Against WA DOH, NHRN, and UWMC
March 23, 2020
Page 2 of 15
NHRN, if the plan is implemented “it will not be pretty.” 2 It is reported that the plan “will assess
factors such as age, health and likelihood of survival in determining who will get access to full
care and who will merely be provided comfort care, with the expectation that they will die.” 3
While discussions about the details of the plan may be evolving, 4 it is clear that it will
discriminatorily disadvantage people with disabilities. For example, guidance distributed by the
WA DOH last week recommends that triage teams consider transferring hospital patients with
“loss of reserves in energy, physical ability, cognition and general health” to outpatient or
palliative care. 5 Published descriptions of the goals and flow charts in the WA DOH and NHRN
plan mirror the existing policy of the state-run University of Washington Medical Center
(UWMC), which gives priority to treating people who are younger and healthier and leaves
those who are older and sicker—people with disabilities—to die. 6 Any plan that discriminates
against people with disabilities in this way violates the legal rights of people with disabilities
and is unlawful.
The disability advocacy organizations Disability Rights Washington (DRW), Self Advocates in
Leadership (SAIL), and The Arc of the United States (The Arc), along with Ivanova Smith as an
individual and self-advocate (together “the Complainants”), file this complaint on behalf of
their constituents, Washingtonians with disabilities who will likely die if medical professionals
are allowed to withhold health care services from them. These constituents include “Rose,” 7an
individual with cystic fibrosis.
DRW is a private non-profit organization that serves as the designated Protection and Advocacy
System for the State of Washington for residents of this state who have physical, mental, or
developmental disabilities pursuant to the federal protection and advocacy acts and state law.8
The Protection and Advocacy Systems were mandated by the federal government in each state,
district, commonwealth, territory, and the Native American Nations in the four corners region
to provide independent advocacy for people with disabilities who are subjected to abuse,
neglect, and serious rights violations.
SAIL is a statewide coalition in Washington State of people with developmental disabilities. SAIL
strives to shape public policies that affect the lives of people with developmental disabilities. Its
members are concerned about how the allocation policies reflected in this complaint could
Id.
Karen Weise and Mike Baker, “‘Chilling’ Plans: Who Gets Care as Washington State Hospitals Fill Up?,”
New York Times (March 20, 2020), https://www.nytimes.com/2020/03/20/us/coronavirus-in-seattle-washingtonstate.html
4
Id.
5
Sheri Fink, “The Hardest Questions Doctors May Face: Who Will Be Saved? Who Won’t?”, New York Times (March
21, 2020), https://www.nytimes.com/2020/03/21/us/coronavirus-medical-rationing.html
6
Material Resource Allocation Principles and Guidelines - COVID-19 Outbreak, University of Washington Medical
Center, available at
https://covid19.uwmedicine.org/Screening%20and%20Testing%20Algorithms/Other%20Inpatient%20Clinical%20G
uidance/Clinical%20Care%20in%20ICU/Material%20Resource%20Allocation.COVID19.docx.
7
Due to fear of retaliation, the constituent’s name has been changed to protect her identity.
8
Developmental Disabilities Assistance and Bill of Rights Act, 42 U.S.C. § 15041 et seq.; the Protection and
Advocacy for Individuals with Mental Illnesses Act, as amended, 42 U.S.C. § 10801, et seq.; the Protection and
Advocacy for Individual Rights Act, 29 U.S.C. § 794e; and RCW 71A.10.080.
2
3

 Roger Severino
Complaint Against WA DOH, NHRN, and UWMC
March 23, 2020
Page 3 of 15
deny care to their members and constituents. Historically, people with intellectual and
developmental disabilities (I/DD) have been subject to a long history of discrimination and
dehumanization in the health care system. Many people with disabilities have had their medical
rights taken away and been denied needed care, including life-sustaining treatment.
The Arc is the nation’s largest organization of and for people with I/DD. The Arc promotes and
protects the human and civil rights of people with I/DD and actively supports their full inclusion
and participation in the community. Included in The Arc’s chapter network of over 600
chapters are ten chapters throughout the State of Washington, including The Arc of
Washington State. The Arc has a vital interest in ensuring that all individuals with I/DD receive
the protections and supports to which they are entitled by law. The organization has long
worked to ensure that people with I/DD are protected from discrimination in receiving medical
care.
Ivanova Smith is an individual with a developmental disability affected by the allocation
guidelines now in place in Washington State. She is concerned about how the guidelines will
affect her and her peers. As a well-known and effective disability rights advocate in the state
legislature, administration, and community, Mrs. Smith—along with the peers she advocates
with and on behalf of—will be at greater risk of discrimination under the WA DOH and UWMC
guidelines in the event she were to fall ill with COVID-19 or another condition requiring the use
of scarce medical resources.
Recent policies put in place by UWMC and WA DOH would place many people with disabilities,
including Mrs. Smith, at risk of great harm and even death. Many among Complainants’
members have weakened immune systems that may mean they will require additional time and
resources, including scarce medical resources, in recovering from COVID-19 and other medical
issues. In addition, Complainants’ membership and constituents may be erroneously seen as
having lower quality of life, justifying denying, withdrawing, or giving lower priority for
treatment with scarce medical resources. Complainants believe that their members and
constituents and the disability community more broadly should not be denied care based on
their disability and their needs for reasonable accommodations and modifications.
The Complainants request that OCR immediately investigate and quickly issue findings and
guidance specifying how physicians and hospitals are to refrain from violating the ADA, Section
504, and Section 1557 of the ACA in making treatment decisions.
As noted in a recent letter to your office from the Consortium for Citizens with Disabilities: 9
Your office has long stood on guard against medical rationing schemes that
discriminate against and otherwise devalue the lives of people with disabilities.
In 1992, then-Secretary Louis Sullivan, relying on advice from your office and the
Department of Justice, rejected Oregon’s proposed health plan precisely because
its rationing provisions discriminated in violation of the Americans with
Disabilities Act. In support of that decision, Secretary Sullivan explained that a
Consortium for Citizens with Disabilities, Letter to Secretary Azar and Director Severino, March 20, 2020,
http://www.c-c-d.org/fichiers/Letter-re-COVID-19-and-Disability-Discrimination-final.pdf.

9

 Roger Severino
Complaint Against WA DOH, NHRN, and UWMC
March 23, 2020
Page 4 of 15
covered entity may consider “a wide range of factors” that are “consistent with
the ADA.” 10 Covered entities, he explained, “may consider, consistent with the
ADA, any content neutral factor that does not take disability into account or that
does not have a particular exclusionary effect on persons with disabilities.” 11 But
they may not discriminate against qualified individuals with disabilities. Nor may
they employ factors that rest “in substantial part on the premise that the value
of the life of a person with a disability is less than the value of the life of a person
without a disability.” 12
The existence of widespread discrimination against people with disabilities in the medical
community when making treatment decisions is well established. 13 More generally, as HHS’s
legal analysis of the Oregon health plan stated, “[s]cholars who have examined quality of life
surveys have concluded that as compared to persons who have the disabilities in question,
persons without disabilities systematically undervalue the quality of life of those with
disabilities.” 14 As Justice Neil Gorsuch has written in explaining his opposition to physicianassisted suicide, “[a]ll human beings are intrinsically valuable…any line we might draw between
human beings for purposes of determining who must live and who may die ultimately seems to
devolve into an arbitrary exercise of picking out which particular instrumental capacities one
especially likes.” 15 Justice Gorsuch notes the history of societal devaluation of people with
disabilities embodied by the eugenics movement, and the inherent risk for abuse the medical
system poses for people with disabilities, particularly with regards to end-of-life treatment.16
OCR has a very brief moment to intercede. If OCR fails to act swiftly to clearly and firmly
articulate the violation of civil rights implicated by the rationing plan about to be unveiled in
Washington, there will be no way to undo the lethal outcome of the discriminatory plans that
have been formulated without OCR’s guidance. We implore you to enforce the obligations of
the health care professionals in Washington to develop non-discriminatory approaches to the
delivery of care before it is too late.
Federal Law Prohibits Discrimination Against People with Disabilities in the Provision of
Medical Treatment
Federal law prohibits public and private actors from discriminating against people with
disabilities. 17 Based on Washington's existing protocols and recent news reports, it appears that
10
Analysis Under the Americans with Disabilities Act (ADA) of the Oregon Reform Demonstration (Attachment to
Letter from Louis W. Sullivan to Governor Barbara Roberts (Aug. 3, 1992)), reprinted in 9 Issues in Law & Medicine
397 (1994) (hereafter “HHS Analysis of Oregon Health Plan”).
11
Id.
12
Id.
13
See, e.g., David Carlson, Cindy Smith, Nachama Wilker, Devaluing People with Disabilities: Medical Procedures
that Violate Civil Rights, National Disability Rights Network and Disability Rights Washington p.40 (2012),
http://ndrn.org/images/Documents/Resources/Publications/Reports/Devaluing_People_with_Disabilities.pdf. See
generally pp. 8-11 below (describing history of disability discrimination in medical care).
14
HHS Analysis of Oregon Health Plan, supra note 10.
15
Neil Gorsuch, The Future of Assisted Suicide and Euthanasia, New Forum Books (2006).
16
Id.
17
See e.g. Americans with Disabilities Act, 42 U.S.C. §§ 12101-12213 (2000)

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Complaint Against WA DOH, NHRN, and UWMC
March 23, 2020
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the state is poised to make decisions on a basis that will deny needed medical treatment to
countless individuals based on their underlying disabilities—without an individualized inquiry
and determination about the efficacy of treatment and the individual’s ability to survive the
virus. Those discriminatory decisions will lead disabled people to die simply because of their
disabilities. That is a violation of disability discrimination laws.
Legal Background
In 1990, Congress acted to combat the widespread discrimination against people with
disabilities. It specifically found that historically, society has tended to isolate and segregate
individuals with disabilities, and, despite some improvements, such forms of discrimination
against individuals with disabilities continue to be a serious and pervasive social problem. 18 The
purpose of the ADA is to provide “a clear and comprehensive national mandate for the
elimination of discrimination” 19 and “clear, strong, consistent, enforceable standards
addressing discrimination.” 20 Regardless of the type or severity of a person’s disability, the ADA
rests on the premise that discrimination inherently causes harm to both the person who
experiences the discriminatory conduct and society as a whole. The current form of
discrimination—rationing treatment on the basis of disability—will leave large numbers of
people with disabilities to die simply because of their disabilities.
Title II of the ADA prohibits state and local governments from discriminating against people
with disabilities. Title III prohibits places of public accommodation such as hospitals, clinics, and
doctors’ offices from discriminating against them.
WA DOH’s rationing plan violates Title II of the ADA and its implementing regulations by
authorizing actions that:
A. Deny a qualified individual with a disability the benefits of the services, programs, or
activities of a public entity because of the individual’s disability. 21
B. “Aid or perpetuate discrimination against a qualified individual with a disability by
providing significant assistance to an agency, organization, or person that discriminates
on the basis of disability in providing any aid, benefit, or service to beneficiaries of the
public entity's program.” 22
C. “[L]imit a qualified individual with a disability in the enjoyment of any right, privilege,
advantage, or opportunity enjoyed by others receiving the aid, benefit, or service.” 23
D. “[D]eny a qualified individual with a disability the opportunity to participate in services,
programs, or activities that are not separate or different, despite the existence of
permissibly separate or different programs or activities.24
Id. at § 12101(8),(9).
Id. at § 12101(b)(1).
20
Id. at § 12101(b)(2).
21
Id. at § 12132.
22
28 C.F.R. § 35.130(b)(1)(v).
23
28 C.F.R. § 35.130(b)(1)(vii).
24
28 C.F.R. § 35.130(b)(2).
18
19

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March 23, 2020
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E. “Directly or through contractual or other arrangements, utilize criteria or other methods
of administration: (i) That have the effect of subjecting qualified individuals with
disabilities to discrimination on the basis of disability; (ii) That have the purpose or
effect of defeating or substantially impairing accomplishment of the objectives of the
public entity's program with respect to individuals with disabilities; or (iii) That
perpetuate the discrimination of another public entity if both public entities are subject
to common administrative control or are agencies of the same State.” 25
F. Fail to “make reasonable modifications in policies, practices, or procedures when the
modifications are necessary to avoid discrimination on the basis of disability, unless the
public entity can demonstrate that making the modifications would fundamentally
alter the nature of the service, program, or activity.” 26
G. “Impose or apply eligibility criteria that screen out or tend to screen out an individual
with a disability or any class of individuals with disabilities from fully and equally
enjoying any service, program, or activity, unless such criteria can be shown to be
necessary for the provision of the service, program, or activity being offered.” 27
Similarly, NHRN and its members violate Title III of the ADA and its implementing regulations
by:
A. Discriminating “on the basis of disability in the full and equal enjoyment of the goods,
services, facilities, privileges, advantages, or accommodations of any place of public
accommodation by any private entity who owns, leases (or leases to), or operates a
place of public accommodation.” 28
B. Subjecting “an individual or class of individuals on the basis of a disability or disabilities
of such individual or class, directly, or through contractual, licensing, or other
arrangements, to a denial of the opportunity of the individual or class to participate in
or benefit from the goods, services, facilities, privileges, advantages, or
accommodations of a place of public accommodation.” 29
C. Using “standards or criteria or methods of administration that have the effect of
discriminating on the basis of disability, or that perpetuate the discrimination of others
who are subject to common administrative control.” 30
D. Imposing or applying “eligibility criteria that screen out or tend to screen out an
individual with a disability or any class of individuals with disabilities from fully and
equally enjoying any goods, services, facilities, privileges, advantages, or
accommodations,” even though such criteria are not necessary for the provision of the
goods, services, facilities, privileges, advantages, or accommodations being offered. 31
28 C.F.R. § 35.130(b)(3).
28 C.F.R. § 35.130(b)(7).
27
28 C.F.R. § 35.130(b)(8).
28
28 C.F.R. § 36.201(a).
29
28 C.F.R. § 36.202(a).
30
28 C.F.R. § 36.204.
31
28 C.F.R. § 36.301(a).
25
26

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Complaint Against WA DOH, NHRN, and UWMC
March 23, 2020
Page 7 of 15
E. Failing to “make reasonable modifications in policies, practices, or procedures, when the
modifications are necessary to afford goods, services, facilities, privileges, advantages,
or accommodations to individuals with disabilities.” 32
Section 504 also prohibits discrimination against people with disabilities by entities that receive
federal financial assistance. DOH and NHRN’s members are recipients of federal financial
assistance, and have engaged in unlawful discrimination under Section 504, including:
A. Excluding from participation in, denying the benefits of, or otherwise subjecting to
discrimination on the basis of disability. 33
B. Denying qualified persons with a disability the opportunity to participate in or benefit
from the aid, benefit, or service. 34
C. Affording qualified persons with a disability an opportunity to participate in or benefit
from the aid, benefit, or service that is not equal to that afforded others. 35
D. Limiting individuals with a disability in the enjoyment of any right, privilege, advantage,
or opportunity enjoyed by others receiving an aid, benefit, or service.36
E. Using criteria or methods of administration that have the effect of subjecting qualified
persons to discrimination on the basis of disability, or that have the purpose or effect
of defeating or substantially impairing accomplishment of the objectives of program or
activity with respect to persons with disabilities. 37
F. Failing to make reasonable modifications in policies, practices, or procedures, when the
modifications are necessary to afford goods, services, facilities, privileges, advantages,
or accommodations to individuals with disabilities. 38
Section 1557 of the ACA prohibits discrimination on the basis of race, color, national origin, sex,
age, or disability in certain health programs or activities. WA DOH and NHRN violate the ACA
through their actions that:
A. “[D]en[y] the benefits of, or otherwise be subjected [a person with a disability] to
discrimination under any health program or activity to which this part applies” 39
B. Fail to “make reasonable modifications to policies, practices, or procedures when such
modifications are necessary to avoid discrimination on the basis of disability.” 40

28 C.F.R. § 36.302(a).
29 U.S.C.§ 794(a); 45 C.F.R. §§ 84.4(a) and 84.52(a)(1); 28 C.F.R. § 41.51(a).
34
45 C.F.R. § 84.4(b)(1)(i); 28 C.F.R. § 41.51(b)(1)(i).
35
45 C.F.R. §§ 84.4(b)(1)(ii) and 84.52(a)(2); 28 C.F.R. § 41.51(b)(1)(ii).
36
45 C.F.R. §§ 84.4(b)(1)(vii) and 84.52(a)(4); 28 C.F.R. § 41.51(b)(1)(vii).
37
45 C.F.R. §§ 84.4(b)(4) and 84.52(a)(4); 28 C.F.R. § 41.51(b)(3).
38
Southeastern Community College v. Davis, 442 U.S. 397 (1979); Henrietta D. v. Bloomberg, 331 F.3d 261, 273–76
(2d Cir. 2003).
39
45 C.F.R. § 92.101.
40
45 C.F.R. § 92.205.
32
33

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Complaint Against WA DOH, NHRN, and UWMC
March 23, 2020
Page 8 of 15
Application of Legal Principles
One of the most important principles of disability discrimination law is that it prohibits covered
entities from acting based on myths, stereotypes, and unfounded assumptions about people
with disabilities. 41 Covered entities must instead make individualized determinations, based on
current objective medical evidence. 42
Applying this principle and the regulatory requirements above to the allocation of scarce
medical treatment during a crisis, the ADA, Section 504 and Section 1557 require the following:
• Decisions about how treatment should be allocated must be made based on
individualized determinations, using current objective medical evidence, and not based
on generalized assumptions about a person’s disability. The mere fact that a person
has diabetes, depression, an intellectual disability, or a mobility impairment, for
example, cannot be a basis for denying care or making that person a lower priority to
receive treatment.
• Treatment allocation decisions cannot be made based on misguided assumptions that
people with disabilities experience a lower quality of life, or that their lives are not
worth living.
• Treatment allocation decisions cannot be made based on the perception that a person
with a disability has a lower prospect of survival. While the possibility of a person’s
survival may receive some consideration in allocation decisions, that consideration
must be based on the prospect of surviving the condition for which the treatment is
designed—in this case, COVID-19—and not other disabilities. In addition, it must be
based on a clear indication from the person’s individual circumstances, interpreted
according to the best available medical evidence in a manner free from bias, that the
person will die in the very short term whether treatment is provided or not.
• Treatment allocation decisions cannot be made based on the perception that a person’s
disability will require the use of greater treatment resources. Reasonable
modifications must be made where needed by a person with a disability to have equal
opportunity to benefit from the treatment. These may include interpreter services or
other modifications or additional services needed due to a disability.
WA DOH and NHRN violate the ADA, Section 504, and Section 1557 by authorizing the denial of
treatment to individuals with disabilities and/or lower priority for individuals with disabilities to
receive treatment based on misguided assumptions about the quality of life, the value of life,
the prospects for survival, and the resource needs of people with disabilities, without the type
of individualized determinations required by the law.
People with Disabilities Have Long Experienced Discrimination in the Provision of Medical
Treatment
Studies have repeatedly documented a persistent bias by medical providers against people with
41
42

School Bd. of Nassau County v. Arline, 480 U.S. 273 (1987).
Bragdon v. Abbott, 524 U.S. 624 (1998).

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Complaint Against WA DOH, NHRN, and UWMC
March 23, 2020
Page 9 of 15
disabilities -- and, notably, a persistent failure of medical providers to fully appreciate the value
and quality of life with a disability. These problems are reinforced by the dramatic
underrepresentation of disabled people in the health professions.
Discrimination is not always driven by malice. In the case of medical discrimination, often the
discriminating provider claims they were simply trying to do what was in the patient’s best
interest and do not view their actions as discriminatory. Nonetheless, many people with
disabilities who seek treatment are denied treatment because medical professionals improperly
decide that would be best based on implicit biases about the quality of life and inherent worth
of people with disabilities. 43
To start, medical decisions are some of the more difficult and personal decisions anyone makes.
These decisions are affected by innumerable factors including sex, race, religion, and financial
resources. 44 Disability status is also an important factor affecting decisions about life sustaining
health care.45
It can be hard for people without disabilities to understand or fully appreciate the scope and
significance of the impact that disability status has on end of life treatment decisions. People
with disabilities and the rest of the general public have differing views of what it is like to have
a disability. Disability and bioethics scholar William Peace wrote about the night in 2010 when
he was approached by a doctor who offered him a way to die.46 He was fighting an infection
and faced a long, expensive and painful path to recovery that would probably include months in
a nursing home and the possibility he may never sit up in his wheel chair again. 47 The doctor he
had never met before laid out the worst case scenario and then offered a path that would end
Peace’s pain, and life, much more quickly. 48 Peace wrote that “Many people – the physician I
met that fateful night included – assume disability is a fate worse than death.” 49 He drives
home how disconcerting and insulting this was in that it came from “A highly educated person
who should be free of bias and bigotry [who] deems your very existence, your life, unworthy of
living.” 50 Mr. Peace points out his situation is not unique and it is widely understood by people
with disabilities that they have very different experiences in hospitals and doctors’ offices than
people who do not have disabilities. 51
The pervasiveness of negative views of disability among physicians cannot be understated. 52
Devaluing People with Disabilities: Medical Procedures that Violate Civil Rights, supra, note 13.
See e.g., Okoro CA, Hollis ND, Cyrus AC, Griffin-Blake S., Prevalence of disabilities and health care access by
disability status and type among adults—United States, 2016. MMWR Morb Mortal Wkly Rep. 2018;67(32):882–7.
45
Id.
46
William J. Peace, Comfort Care as Denial of Personhood, 42 Hasting Center Report 14 (2012).
47
Id.
48
Id. at 15.
49
Id.
50
Id.
51
Id. He points out that while people with disabilities who want to live must fight to get treatment, those with
disabilities who forgo treatment and die are lionized a role models of heroism.
52
As an example, research has been done on the way in which pediatricians inform parents their children have
down syndrome. Almost every mother in the study reported physicians referring to their children in derogatory
and stigmatizing ways with labels and generalizations based upon diagnosis that have been rejected by people
43
44

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Complaint Against WA DOH, NHRN, and UWMC
March 23, 2020
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One physician responding anonymously to a research study candidly admitted that:
In general, what I was taught in medical school and in my training is that
disability – no matter what its form – is a bad thing and should be avoided at all
costs. Lectures or seminars on [Down Syndrome] or other genetic syndromes are
geared toward the description of the abnormalities…that children with
congenital diseases may find their lives rich and valuable was hardly recognized,
much less stressed. 53
Similarly, when people with disabilities were asked in focus group discussions about medical
discrimination, one person pointed out that “[d]octors are trained to be academic. They are
trained to think about what the disability is, not what the person can do. Very few doctors have
positive examples when they explain diagnoses to new parents. Many of them are not even
aware of the lives people with disabilities – even severe disabilities – are living.” 54 Another
participant suggested that all doctors while in medical school should take a class on disabilities
taught by a person with a disability. “Doctors need to come and sit with people with
disabilities…They (doctors) think they know about us… but it is like they are window shopping
at our lives.” 55
It is not hard to see how negative views of disability persist in the medical community. 56 Last
fall, the National Council on Disability released a series of reports about numerous problems
with the way bioethics and the medical profession at large relate to people with disabilities. 57 A
recent medical study similarly showed open hostility to people with disabilities by a large
segment of the medical community who refuse even to treat patients with disabilities. 58 A
quarter of doctors in the study refused to schedule an appointment with potential patients who
used wheelchairs.59 Another recent survey confirmed that physicians “demonstrated

with disabilities and their families and advocates for quite some time. As recent as 1998, a mother who gave birth
to a child who had Down Syndrome was informed of the condition by being told that her child was a “mongoloid.”
Another mother who learned of her child’s diagnosis of Down Syndrome after she gave birth in 1992 was told by
her doctor to get amniocentesis the next time she was pregnant so that she could “choose to terminate.” Brian
Skotko, Mothers of Children with Down Syndrome Reflect on Their Postnatal Support, Pediatrics 64-77 at 71 (2005).
53
Mothers of Children with Down Syndrome Reflect on Their Postnatal Support, at 65, supra note 52.
54
Devaluing People with Disabilities: Medical Procedures that Violate Civil Rights, supra note 13.
55
Id.
56
This medical bias against disability is not isolated to the United States and its medical institutions, the same
study was conducted simultaneously in Spain with similar results were found. Brian Skotko, Mothers of Children
with Down Syndrome Reflect on Their Postnatal Support: An International Call for Change, Italian Journal of
Pediatrics 237-245 (2005).
57
National Council on Disability, “Bioethics and Disability Report Series,” (2019)
https://ncd.gov/publications/2019/bioethics-report-series
58
Pauline W. Chen, “Disability and Discrimination at the Doctor’s Office,” The New York Times (May 23,
2013),https://well.blogs.nytimes.com/2013/05/23/disability-and-discrimination-at-the-doctors-office/, citing Lagu
T, Hannon NS, Rothberg MB, et al. Access to Subspecialty Care for Patients With Mobility Impairment: A Survey.
Ann Intern Med. 2013;158:441–446. doi: https://doi.org/10.7326/0003-4819-158-6-201303190-00003
59
Id.

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March 23, 2020
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superficial or incorrect understanding” of the ADA and other anti-discrimination laws. 60
Some in the bioethics community even believe that the concepts of dignity and rights do not
apply to people with certain disabilities. 61 As one bioethicist wrote of a young girl with
intellectual and physical disabilities subjected to an involuntary surgery to prevent her growth
by removing her uterus and mammary glands and administering high doses of hormones, the
girl “is not deprived of anything that she values because she does not have the capacity to value
her own existence, let alone to miss anything taken from her.” 62 Another well regarded
bioethicist goes one step further in talking about the same young girl: “[w]e are always ready to
find dignity in human beings, including those whose mental age will never exceed that of an
infant, but we don’t attribute dignity to dogs or cats, though they clearly operate at a more
advanced mental level than human infants.” 63 He concludes that children with significant
intellectual disabilities have no intrinsic value and whatever value they may have is merely a
function of their family’s positive regard. 64
This bias against people with disabilities is not benign. Its impact can be seen in the way
physicians provide treatment. Research has shown that disabled patients “experience health
care disparities, such as lower rates of screening and more difficulty accessing services,
compared to people without disabilities.” 65
Thus, not only do negative views of disability contribute to medical professionals deprioritizing
delivery of treatment, but individuals with disabilities have frequently experienced more
difficulty getting treatment in the past due to discrimination, which may now compound the
factors used to deny them treatment for COVID-19 during this pandemic.
Discriminatory Rationing Plans Are Being Put in Place in Washington State
OCR has already received letters within the last week from the National Council on Disability, 66
the independent federal agency charged with advising the President, Congress, and other
federal agencies regarding policies, programs, practices, and procedures that affect people with
disabilities, and the Consortium for Citizens with Disabilities, 67 the nation’s largest coalition of
Nicole D. Agaronnik, Elizabeth Pendo, Eric G. Campbell, Julie Ressalam, and Lisa I. Iezzoni, Knowledge Of
Practicing Physicians About Their Legal Obligations When Caring For Patients With Disability, HEALTH AFFAIRS VOL.
38, NO. 4: PHYSICIANS, MEDICARE & MORE (April 2019), https://doi.org/10.1377/hlthaff.2018.05060.
61
Merle Spriggs, Ashley’s Interests Were Not Violated Because She Does Not Have Necessary Interests, The
American Journal of Bioethics, 52-54 (2010).
62
Id.
63
Peter Singer, “A Convenient Truth,” New York Times (January 26, 2007),
https://www.nytimes.com/2007/01/26/opinion/26singer.html.
64
Id., stating Ashley “is precious not so much for what she is, but because her parents and siblings love her and
care about her.” Singer argues that infants are not persons, and as such killing them is not as morally bad as killing
older humans. This is not an isolated theory in bioethics, Alberto Giubilini and Francesa Minerva argue in favor of
“after birth abortions” being an option to parents when it is discovered a child is born with a disability. Alberto
Giubilini, Francesa Minerva, After – Birth Abortion: Why Should the Baby Live?, J. MED. ETHICS (2012).
65
Iezzoni LI. Eliminating health and health care disparities among the growing population of people with
disabilities. Health Aff. (Millwood). 2011;30(10):1947–54.
66
National Council on Disability, Letter to Roger Severino (March 18, 2020),
https://ncd.gov/publications/2020/ncd-covid-19-letter-hhs-ocr
67
Letter to Secretary Azar and Director Severino, supra note 9.
60

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March 23, 2020
Page 12 of 15
disability organizations, asking OCR to issue guidance to health care providers about their
obligations to not discriminate against people with disabilities within the context of delivering
COVID-19 related care. These longstanding, well-respected national organizations correctly
recognize that rationing is coming and if medical professionals are left to their own devices,
people with disabilities will bear the brunt of the fatalities in rationing plans. In the days since
these letters came out, articles in the New York Times 68 and Seattle Times 69 have confirmed
that the concerns addressed in those letters are already ripe as the state of Washington and
health care providers across Washington have been in talks about rationing health care and the
release of their plan is imminent. What has already been made clear is that the plan will leave
people with disabilities to die, by virtue of simply having a disability, in order to preserve the
system’s capacity to treat people without disabilities.
WA DOH and NHRN are developing their plan behind closed doors. That is troubling in any
circumstance dealing with decisions of life and death. But the lack of transparency is
particularly important given the history of discrimination against people with disabilities in
medical treatment.
What we do know is that the description of the future plan and the flow charts of the
previously circulated plan are consistent with the existing plan developed for the state-run
UWMC’s policy on rationing during the COVID-19 pandemic. That policy specifically states that
resources will be allocated pursuant to the following principles:
The standard construct for medical resource allocation in time of scarcity is
based upon a utilitarian framework, often stated as making decisions that
provide the greatest good for the greatest number. It is worth noting that this
stance differs from the standard approach of clinicians, who see their ethical
obligation as advocating for and prioritizing the care of a particular patient.
Greatest good, in a protracted clinical situation such as the COVID-19 outbreak,
is generally considered maximizing survival of patients with COVID-19 within the
institution and the region. Overall survival may be further qualified as healthy,
long-term survival, recognizing that this represents weighting the survival of
young otherwise healthy patients more heavily than that of older, chronically
debilitated patients. Such weighting has general support in medicine and societyat-large.70
This plan, which rations care on the basis of disability, is a clear violation of federal disability
rights laws.

“‘Chilling’ Plans: Who Gets Care as Washington State Hospitals Fill Up?,” supra note 3; “The Hardest Questions
Doctors May Face: Who Will Be Saved? Who Won’t?,” supra note 5.
69
“‘It will not be pretty’: State preparing to make life-or-death decisions if coronavirus overwhelms health care
system,” supra note 1.
70
Emphasis in the original, Material Resource Allocation Principles and Guidelines - COVID-19 Outbreak, University
of Washington Medical Center, available at https://covid19.uwmedicine.org/Screening%20and%20Testing%20Algorithms/Other%20Inpatient%20Clinical%20Guidance/Clini
cal%20Care%20in%20ICU/Material%20Resource%20Allocation.COVID19.docx.
68

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March 23, 2020
Page 13 of 15
The policy explicitly states that doctors will be instructed to not do what is best for their
individual patients and instead deny them treatment if it would mean a younger, healthier
person in the region could get treatment. Thus, if you have one ventilator, and two people who
need it, the ventilator should go to the healthier person who is more likely to recover, although
that patient may arguably need it less.
Moreover, the WA DOH and NHRN plan distributed last week states that “baseline functional
status (consider loss of reserves in energy, physical ability, cognition and general health)" will
be used as a factor in determining whether someone will get access to lifesaving treatment.
This is a highly subjective open-ended exclusionary factor that invites physicians to make
allocation decisions based on unchecked bias about quality of life of patients with disabilities
that does not reflect the actual value those patients place on their lives. Physicians are afforded
the sole, unfettered discretion to predict future prognosis as underlying health conditions
interact with COVID-19 and the resources available to provide treatment. No guidance is given
to how much weight should be given to one factor over another. This calculation is highly
speculative and subject to bias and is compounded by requiring additional speculation about
how long the critical care resource will be needed and prognosis with consideration to both
current epidemiology and underlying illness. 71 Extending this degree of discretion to medical
professionals is incredibly dangerous given the bias many physicians hold. 72 Unbridled
speculation empowers physicians to apply their explicit and implicit biases to individuals with
disabilities.
As an example of how DRW’s constituents are affected, Rose 73 is a current UWMC patient who
fears for her life if this plan is in place if she gets sick from this pandemic. Rose is an established
patient of the Cystic Fibrosis clinic at the UWMC. She is deeply concerned that UWMC’s
resource allocation guidelines for COVID-19 and the WA DOH and NHRN plan circulated last
week threaten her ability to access lifesaving care if she was to develop severe COVID-19
complications requiring mechanical ventilation.
Cystic fibrosis is typically perceived as a severe condition. If a clinician knows only that an adult
patient has a diagnosis of cystic fibrosis, they are likely to make certain assumptions in the
absence of a more detailed medical history: for example, severe pulmonary impairment,
frequent hospitalizations and courses of IV antibiotics, and a reasonable expectation of death
by age 30. At 28-year-old, Rose may at first glance look to be at the end of her expected life to a
COVID-19 triage administrator responding to voluminous requests from providers across the
region. Rose worries that the hospital will see her diagnosis and determine she poses an
unreasonably high risk of not recovering and that even if she can recover, she is likely near the
end of her expected life. Accordingly, if Rose needs lifesaving treatment, she is likely to be
denied that treatment under Washington’s plan. However, a closer look would show that the
WA DOH and NHRN Scarce Medical Resource and Crisis Standards of Care, p.35 (March 16, 2020)
https://nwhrn.org/wpcontent/uploads/2020/03/Scarce_Resource_Management_and_Crisis_Standards_of_Care_Overview_and_Materi
als-2020-3-16.pdf.
72
Id. at 34.
73
Due to fear of retaliation, the constituent’s name has been changed to protect her identity.
71

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March 23, 2020
Page 14 of 15
test of her breathing capacity shows she is above the 70th percentile when compared to the
population at large, not people with cystic fibrosis, and she has never been hospitalized or
received IV antibiotics.
The UWMC’s “Material Resource Allocation Principles and Guidelines” emphasize maximizing
survival. They further qualify “overall survival” as “healthy, long-term survival, recognizing that
this represents weighting the survival of young otherwise healthy patients more heavily than
that of older, chronically debilitated patients.” Based on the assumptions about people with
cystic fibrosis referenced above, Rose reasonably expects to be at risk of discrimination in any
system that does not prohibit withholding treatment on the basis of underlying diagnosis. She
has no confidence that any decision UWMC makes about whether she get lifesaving treatment
during the COVID-19 pandemic will be based on her individual circumstance or sound medical
evidence. She cannot be expected to simply trust that hospital officials in a triage situation will
review and evaluate her past tests and medical history in sufficient detail to get beyond the
existence of her cystic fibrosis diagnosis. Moreover, the policy offers no process by which she
will be given notice of the decision and an opportunity to see what records and data the
hospital has reviewed and the weight it was afforded. Nor does it offer a process by which she
could challenge the determination to point out errors.
Rose’s case shows how this plan will have a heavy impact on people with disabilities. While
medical knowledge of COVID-19 is constantly evolving, it is known that having an underlying
medical condition heightens the effect of the virus. The conditions frequently mentioned
include compromised immune, respiratory, cardiovascular and endocrine systems. All of these
are common symptoms of many different physical disabilities and when significant enough
form the basis of the disability on their own. Therefore, people with existing disabilities are
likely to be the ones who die from this pandemic.
Similarly, Ivanova Smith, the Chair of Complainant SAIL, is also impacted by the allocation
guidelines now in place in Washington State and is concerned by how this might impact her
peers. A person with an intellectual disability, Mrs. Smith is a parent of a young child, a
homeowner and an experienced and effective disability rights advocate. But in the event that
she was to fall ill with COVID-19 or another condition requiring the use of scarce medical
resources, the Department of Health and UWMC guidelines both place Mrs. Smith and her
peers at greater risk of discrimination. As a person with an intellectual disability, she would be
at a disadvantage in accessing care due to the Department of Health's use of baseline functional
status (including cognition) at multiple steps in their triage protocol, including in the allocation
of critical care resources and their potential re-allocation (i.e, the withdrawal of life-sustaining
treatment).
Mrs. Smith has a well-founded fear that such a policy will result in her being inappropriately
denied medically indicated care by reason of her disability. "I know already intellectually
disabled people get denied care because of being seen as lacking value," she said, adding that "I
deserve the same rights as anyone else. These policies discriminate against me and put my life
at risk."
Today the health care community in Washington is moving forward with a plan to carry out a
policy that would effectively result in death sentences for people with disabilities like Rose and

 Roger Severino
Complaint Against WA DOH, NHRN, and UWMC
March 23, 2020
Page 15 of 15
Mrs. Smith, without individualized determinations or consideration of federal law
requirements. They are choosing to place the great number of people who need COVID-19
treatment with either pre-existing or newly acquired significantly limiting health conditions to
the side without offering treatment other than palliative care. Instead, they would focus on the
people who do not have underlying health conditions. Doctors are actively choosing to usher
the latter group to the front of the line to help them heal while the others wait to die.
Conclusion
Complainants request OCR immediately investigate and resolve this complaint of disability
discrimination, and detail what Washington health care providers must do to comply with
federal laws protecting the rights of all patients, including those with disabilities, during the
COVID-19 pandemic. Guidance is needed within hours or days, not weeks or months given that
Washington is at the epicenter of the U.S. epidemic—the pandemic is spreading at a rapid pace,
and the number of confirmed cases and deaths is climbing each day.
Please contact David Carlson, Director of Advocacy of Disability Rights Washington, at 206-3241521 or davidc@dr-wa.org with any questions or responses to this complaint.
Respectfully,
David Carlson
Disability Rights Washington
901 North Monroe Street, Suite 340
Spokane, WA 99201
davidc@dr-wa.org
206-324-1521

Shira Wakschlag
The Arc of the United States
1825 K St. NW, Suite 1200
Washington, D.C. 20006
wakschlag@thearc.org
202-534-3708

Jennifer Mathis
Bazelon Center for Mental Health Law
1090 Vermont Avenue, NW, Suite 220
Washington, DC 20005
jenniferm@bazelon.org
202-467-5730

Cathy Costanzo
Alison Barkoff
Center for Public Representation
22 Green Street
Northampton, MA 01060
ccostanzo@cpr-ma.org
abarkoff@cpr-us.org
413-586-6024

Samantha Crane
Autistic Self Advocacy Network
PO Box 66122
Washington, DC 20035
scrane@autisticadvocacy.org
202-509-0135

Samuel Bagenstos
625 South State Street
Ann Arbor, Michigan 48109
sbagen@gmail.com
734-647-7584