Thread by @woodrumlaw

Attending a Webinar right now via the American Bar Association called "Disability Discrimination in the Rationing of Life Saving COVID Treatment: Who Gets Left Behind?" Will try to share on this thread as it progresses, looking forward to learning a lot. . .

Shira Wakschlag is speaking generally now about problematic plans nationwide regarding COVID treatment prioritization. "Concerns about disability discrimination and medical treatment are not new." Implicit bias at play historically as well as regarding treatment right now.

Jennifer Mathis covering the legal framework/federal laws that apply here and application to situations being seen right now. ADA cited as a core legal protection, "The fact that we are in the midst of a pandemic doesn't mean that the federal disability rights laws don't apply."

Title II applies to public entities (state and local government), including states promulgating rationing policies for how to allocate scarce resources, public hospitals, and public health care facilities. Title III applies to privately run public accommodations.

Section 504 of the Rehabilitation Act applies to healthcare establishments receiving federal financial assistance, among others. Section 1557, non discrimination provision of ACA applies to certain healthcare establishments, health insurance marketplaces, etc. per J. Mathis.

Individualized assessments have to be based on the best available medical evidence & not generalized presumptions about a diagnosis or category of disability. Covered entities can't assume someone is not qualified to receive treatment (incl. presumptions re: long term survival).

Just using a disability diagnosis is not an individualized assessment. Should what is being rationed depend on an assessment of who would benefit from the treatment? No, you can use narrowing to determine who is qualified/prioritized that are disability neutral.

Do not use the absence of a disability to determine qualifications for rationed treatment. Seeing in this context per J. Mathis: protocols considering people's prospects of "long term survival" based on pre-existing disability regardless of being able to benefit from treatment.

Other determinations that weigh "quality of life" negatively impact people with disabilities from receiving treatment based on value judgments about people's lives. A now resolved case in Alabama: policy said significant Intellectual Disability disqualified ventilator provision.

Reasonable accommodation must be made - some policies leave out ADA/504/1557 requirements to adjust policies to ensure equal treatment for those with disabilities. Ex: this would incl. interpreter services, having family or service provider be present even if req. mod. of rules.

David Carlson (of the Wash. P&A organization) now covering first case in this arena - in Washington State. Explaining how claimants and advocates came together over a weekend after particulars of the plan came out on Friday. By Monday the complaint was ready.

D. Carlson: Medical discrimination against people with disabilities is quite common (ex: organ transplant policies, sterilization matters, etc.). The plan in Washington was developed by doctors and bioethicists but only public after national and local media coverage.

Washington guidance looked at loss of reserves in energy, physical ability, cognition, and general health about determining factors - "highly subjective" per D. Carlson. Advocates for equity know the more discretion given, easier for implicit or structural bias to get in.

Issue between how medical professionals would value someone's life versus how that person values their own life/quality of life. Policies providing for palliative care (and not ICU care) also troubling: looked at "overall survival" or "healthy long term survival."

Important to avoid stereotypes, myths, & assumptions. Briefing showed evidence of bias among medical professionals when working with individuals with disabilities. D. Carlson: "Some bioethicists are openly hostile to people with disabilities." Need individualized determinations.

Shouldn't be looking at 3 or 4 years out for patients - need to use best available medical evidence and not generalized assumptions. Ask if someone can survive COVID with treatment/intervention, not what their life expectancy in general might be. - D. Carlson

Now hearing from Ivanova L. Smith. Sharing concerns about disproportionate impact in disability communities to start with because of COVID, importance of not being denied medical care as individuals with disabilities.

Long history referenced of restriction of medical rights per I. Smith, mentioning things like guardianships cutting people off from their own decisions in medical care, for example. "Want society as a whole to see that we're speaking up for ourselves [...] we won't allow it."

Need for self advocates to be at the table discussing how care is received, should not be excluded. - Ivanova Smith

Alison Barkoff speaking about the long history of discrimination in accessing healthcare for people with disabilities. By March in the US, the disability community had already activated as they had watched COVID-19 play out internationally in care rationing, etc.

A. Barkoff referencing @NatCounDis imploring the OCR (Office of Civil Rights) to put out guidance on discriminatory policies, among others. Filing complaints against actual policies coming out was a crucial strategy in Washington state and to get national guidance out there.

Links shared in the webinar chat just now:

thearc.org/resource/hhs-o…

centerforpublicrep.org/covid-19-medic…

A. Barkoff: To the extent that there was some conversation in the media or concerns that civil rights laws were being put aside in emergencies...this was not the case and guidance did come out.

Complaint in Alabama focused on categorical exclusions, in Kansas there were also categorical exclusions based on disability diagnosis and even that people who came in for treatment could have their own ventilators taken from them if they went into the hospital for treatment(!)

Tennessee was another state with concerns. Pennsylvania also focused on "long term survivability" with scales that had heavy weights against people with disabilities. Utah and New York also had subjective policies. NY's was like Kansas' policy per A. Barkoff.

A. Barkoff: OCR early case resolution applicable across the country - policies could not categorically exclude people based on diagnosis, also had important principles surrounding age cutoffs. Alabama agreed to withdraw their policy and communicate about obligations statewide.

A. Barkoff: Most of the advocacy happening across the country are through disability coalitions (with racial justice groups, aging groups, etc.) to affirmatively work with state governments on these issues (so not just litigation right now).

Ex: in Illinois, recent non-discrimination guidance from governor after working with advocates. . .in Colorado they agreed to no reallocation of vents, no categorical exclusions, adopted via executive order. . .

Advocacy making a difference in accommodations related to presence of supporters/visitors. Policy out of Chicago, another in Oregon referenced as well. A. Barkoff: difference in just two weeks is very different.

Sam Crane now addressing attendees. State level advocates already on the ground working on policies were reaching out nationally to ask for guidance to recognize when a policy was permissible or impermissible.

S. Crane sharing that giving specific examples are helpful - such as how triage plans need to lay out the training needed on non-discrimination and the importance of making these plans accountable to stakeholders. Or what reasonable accommodations to include in your plan.

S. Crane: For example, regarding not doing individualized assessments - You can't use HIV status as a proxy for determining who is immune-suppressed because effective management can actually make that not be the case.

Another link being shared that has all of the OCR guidance, complaints, state letters, policies, etc. to review and draw from:

centerforpublicrep.org/covid-19-medic…

S. Crane: importance of media advocacy to this movement - it is a compelling narrative that when we're in crisis, who get's left behind and who get's care seems to be interesting to the general public and high profile media coverage has been happening.

Media coverage has effect of raising awareness with the public and framing the narrative to put a personal face on matters. Additionally puts things on Governor and Hospital radars as a priority. Vent reallocation was buried in one state's otherwise good policy, for example.

S. Crane: State level media coverage can help advocates identify exemplars and helpful to pushing back on bad plans.

On to Q&A portion: How do reasonable modifications work in this context and who provides the accommodation?

Reasonable accommodations are very context specific per S. Crane. Plus the undue burden concerns. Have to be individualized.

D. Carlson: the idea of a reasonable accommodation brings us back to the whole issue of not having a bright line of what is reasonable so you shouldn't have a bright line rule on, say, numbers of days on a ventilator.

Question about laws that shield doctors from liability and how they interact with this issue.

A. Barkoff: Federal civil rights law remain in place so the liability protections wouldn't bar injunctive relief or civil rights enforcement even though it may block tort claims.

J. Mathis: these state laws or emergency declarations, to the extent that they are inconsistent with federal laws, they should be preempted by federal civil lights laws. They can address certain state claims possibly but not federally based claims.

I. Smith: there are also people dying of other medical conditions associated with not getting medical care so it is important to not have discrimination for any medical condition, not just COVID-19 related concerns.

S. Crane: not everyone needing a vent in the ER has COVID-19.

Q: How can people with disabilities seeking hospital treatment make sure these principles are being applied?

S. Wakschlag: trying to get the word out via complaints, webinars, complaints. . .take as a preventative approach as possible to provide resources as plans develop.

I. Smith: In Washington we've been creating plain language documents for self advocates to know their rights. State ombudsmen also helping inform individuals they assist. Encouraging Governor's office to have people w/ID/DD be represented in oversight & training to triage teams.

J. Mathis: Other state advocates have been posting guides and know your rights documentation online.

A. Barkoff: ACL funded center that posted plain language guide for medical professionals as well.

Q: Does guidance from HHS also include tracking health disparities for people of color who have disabilities?

A. Barkoff: coming into focus on disparate impact includes a big push both from members of Congress and advocacy coalitions on data collection in this area.

The webinar concluded, they will be posting it on the ABA website at some point along w/captioning & the links that were shared. Thanks for following along, I am in awe of the great advocacy happening all over today and every day.

Here is the link to the free program with captioning and additional resources:

americanbar.org/groups/crsj/ev…

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