Below is a joint letter written and organized by the Disability Justice League-Bay Area submitted as public comment to the Community Vaccine Advisory Committee, California Department of Public Health, on February 28, 2021. The Disability Justice League-Bay Area is QTIPOC disabled group committed to cross-movement organizing through direct action, engagement, and critical advocacy.
This is the fourth letter in a series by a coalition of groups. Here is the third letter submitted on February 14, 2021 and the second letter submitted as public comment on December 22, 2020 from FatRose.org.
- If YOU have questions or concerns on vaccine equity, you can send your written public comments to the Community Vaccine Advisory Committee: COVID19VaccineOutreach@cdph.ca.gov
- You can attend their upcoming meetings on March 3 and March 17, 2021 and review their past meetings’ presentations, agendas, and written public comments here: https://www.cdph.ca.gov/Programs/CID/DCDC/Pages/COVID-19/Community-Vaccine-Advisory-Committee.aspx
- Send a message to the Governor and your local elected representatives.
- Share your story on social media with the hashtags #HighRiskCA and #NoBodyIsDisposable and tag @GavinNewsom and @CAPublicHealth
- Are you delaying important medical care, treatment, or testing while you wait for the vaccine? Participate in community surveys on delayed care or avoidable death by the No Body Is Disposable coalition and share with others.
Action Toolkit for Vaccine Equity for National and State policymakers, Senior Disability Action, No Body Is Disposable Coalition, the California Foundation for Independent Living Centers and others
Vaccine Equity memes, Disability Visibility Project
Background on vaccine access in California, No Body Is Disposable Coalition
Whose Underlying Conditions Count for Priority in Getting the Vaccine? Liz Bowen, Scientific American
New Analysis of COVID-19 Mortality Risk for Californians with Disabilities Under Age 65, Dr. H. Stephen Kaye, DREDF
Final Submitted Version, February 28th, 2021
Community Vaccine Advisory Committee
California Department of Public Health
Dear California Department of Public Health and California Community Vaccine Advisory Committee Members and Staff:
On March 15th, 2021, California will open eligibility to specified people with high risk disabilities and medical conditions. We urge the state to use this critical time to ensure California is prepared to roll out the vaccine in ways that (1) prioritize accessibility and equity, (2) reduce barriers to vaccination, (3) engender trust and confidence from communities that have been subject to bias, trauma, and violence from public health systems, (4) expand the definition of people with high risk disabilities/conditions, and (5) ensure all people with high risk disabilities/conditions will be prioritized, including all immunocompromised people, before opening eligibility to the lower-risk public.
Note: When we refer to people with high risk disabilities/conditions it’s inclusive of people who are fat and/or have high risk disabilities and medical conditions, chronically ill and immunocompromised individuals.
We have divided our equity-related feedback into three themes: Transparency, Accessibility, and Policy.
- Live and Direct: Open the disability vaccine operations planning meetings to the public and provide minutes in real time.
- Disability Justice Focus: Provide for disability justice by inviting the Disability Justice community to the table both on the Vaccine Advisory Committee and on the Operations team.
Disability Justice principles take into account race, class, and other identity and systemic factors that oppress people with disabilities. Critical intersectional concerns of disabled and higher weight Black, Indigenous and brown people, who have a higher mortality rate, are not currently adequately represented in the advisory group, the workgroup, or the disability Operations team.
- Weight Justice Focus: We continue to request you include on the Vaccine Advisory Committee, and now also on the Operations team, a person or organization with experience advocating for or representing the civil rights of fat/higher weight people.
- Actions over Words: We appreciate the acknowledgement of our requests for representation in the last comment summary; we’re asking that the substance of our concerns included in the summary along with a demonstration of the steps being taken to address them. Disability Justice is not a catchphrase, it’s an ongoing commitment and practice.
- Website Accessibility: Over 40 years after the Americans with Disabilities Act passed, many covid vaccination registration and information websites at the federal, state and local levels violate disability rights laws. It was clear at the last Vaccine Advisory Committee meeting that there is no commitment to the public of a timeline for making MyTurn accessible.
Ensure MyTurn.gov is fully WCAG 2.1 compliant and accessible. Until then, provide a detailed status update in each VAC meeting including dates for full compliance and publicly post a report on the CDPH website regarding current accessibility compliance status.
Cultural Note: Inaccessibility in a tech-savvy state such as ours communicates a disregard of civil rights law, and also communicates a disregard for the disabled community in its entirety.
- Simplify Process and Reduce Barriers: Ensure that people with the specified high risk disabilities and medical conditions (ie: “severe health conditions”) can self-certify or attest that they meet the requirements (EX: A1C > 7.5) without obtaining a healthcare provider’s note.
Healthcare providers may use their clinical judgement to vaccinate 16-64 who are deemed to be at the very highest risk…from COVID-19 as a direct result of one or more of the following severe health conditions…
The current requirement of certification by a healthcare provider that a person is “at the very highest risk” is an overbroad, unclear standard that invites bias.
This should be simple: If a person meets any of the criteria in California’s narrowed CDC list, they should be automatically eligible for vaccination. Period. No further clinical judgement required.
Requiring a healthcare provider’s certification that the person not only meets the criteria, but is also at “very highest risk” creates an additional hurdle not required of other cohorts. This barrier will be especially burdensome for people with limited resources, who face bias in healthcare, or who have inconsistent access to healthcare and will disproportionately impact Back, brown, Indigenous, poor, fat, and other marginalized communities.
Cultural Note: It is offensive and infantilizing to tell a disabled person they must have a doctor’s note to prove their disability, or to tell a fat person they must have a doctor’s note to prove they are fat. California can do better.
- Simplify Discretion Requirement: We urge the working group to find a way to simplify the process and reduce access barriers to underserved populations. People who meet eligibility via a healthcare provider’s discretion (as opposed to having one of the enumerated “severe health conditions” or disabilities), should be permitted to bring a simple healthcare practitioner’s note to certify their eligibility; that note should be accepted as proof of eligibility at any vaccination site. This is specifically meant to benefit underserved populations and areas.
- Reserve Access Code for Disabled BIPOC: Group vaccination codes already released for use by people with high risk disabilities and conditions and/or for use by Black, brown, Indigenous and people of color are appreciated. Presuming the program can continue, we want an additional group code reserved specifically for disabled BIPOC to ensure people at the intersection of these communities will be able to find a vaccination appointment when they become eligible. People at the intersections of multiple identities face significant barriers.
Time is not on our side: There are people who will die before getting access to the vaccine. Actions by the State send an important message about who is valued and who is seen as disposable. We need a clear statement that California values people at the intersections especially in times of scarcity.
- Separate Is Not Equal*: Confirm that people with high risk disabilities/conditions will have access at all public facilities providing vaccinations. Members of our organizations have requested clarification of this point repeatedly since a discriminatory plan was first proposed by the Working Group. Subsequent media messaging is unclear, with some reporting access will be allowed at “ medical providers or mass vaccine clinics. ”
*Taking into account that individuals who are heavily policed based on gender identity should be free to choose the vaccination environment most friendly and accessible, which may not be a healthcare provider.
- Mobile Vaccination: Make mobile vaccination a priority because there are community members who do not have homes, or cannot leave their homes, and who are at high risk either because of their conditions or because they come into contact with help providers.
Many unhoused disabled people do not have confidence in the public health system. What steps are the state and the working group taking to ensure trust within communities that have been underserved and undermined? For example, many unhoused individuals are terrified that similar to the flu shot, vaccines will be required to get a shelter bed. If these individuals do not have access to the vaccine it will affect shelter placement which has an effect on eligibility for other direct public health services.
- Reduce Registration Barriers: Improve the ease of registering for vaccination appointments for people who do not have email or cell phone access by not requiring email or cell phone numbers during the registration process on MyTurn.
Make technological access considerations to include people with disabilities who are not able to navigate the registration system without access support. These individuals should all be assigned a public health advocate or community member worker that can provide thorough registration support.
For example: Someone with voice or speech that is commonly misunderstood and a device is inaccessible to them, will need an advocate to register and confirm travel for both doses.
- Create a plan, or partner with CBOs to create plans, to ensure accessible transportation to and from vaccination sites. Paratransit is unreliable.
- We are in solidarity with the California Transit Association letter on eligibility. We are asking the state and the Working Group to take into consideration the (1) number of people who rely on public transportation and privatized paratransit services to get to vaccine sites, (2) risk transit workers who continue to work and put themselves and their communities at risk daily, and (3) The California public transit workforce is disproportionately people of color, compared to California overall population. There are an especially disproportionate number of Black people working in public transit compared to the approximately 5% overall population of Black people in the entire state.
We understand there are limited vaccines at this time. Perhaps we can consider an approach that rolls out the vaccine by a percentage of defined categories that are potentially at risk on multiple levels.
- Detention Centers and Halt to Migrant Transfers: As committee leader Surgeon General Nadine Burke Harris is aware 571 people have tested positive for the coronavirus in California’s seven immigration detention centers, including 270 at the Adelanto facility in San Bernardino County. One detainee died of COVID-19 at the Otay Mesa facility in San Diego County, according to ICE’s COVID-19 tracker. Child and adult migrants are in federal custody, but they are currently on state land. We consider this a disability justice issue as some people in this position have compromised health and /or may spread infection via transfers to others who do. We expect the state to take responsibility for vaccination at all detention centers within the State of California and declare a halt to migrant transfers.
- Expand the CA List: Expand the California list of articulated high risk conditions to include the full CDC list, and add additional high-risk conditions.. California is a national model, we should be going above and beyond the federal guidelines.
We are particularly concerned that the manner in which California has adjusted the list will tend to disproportionately exclude Black, brown, Indigenous, and certain people of color. Higher weight, diabetes, hypertension are all conditions that may be more prevalent among certain communities of color, but these conditions are all limited (BMI must be over 40, A1C must be over 7.5, hypertension is excluded) on California’s list. The result will impose further hurdles to vaccinating Black, brown, and Indigenous people in California.
- All High Risk People Are Prioritized: Prioritize all high risk populations, ongoing, including incarcerated people and those in other congregate settings before opening up eligibility to the lower risk population who can afford to remain home. Nobody is Disposable. Again, we want to ensure the highest at risk in California as we’re defining it is our priority population and that we encourage those who can, to stay home.
- Immediate Access: Allow people with high risk disabilities and medical conditions to access the vaccine immediately, no questions asked, rather than waiting for March 15th, 2021 eligibility date.
Disabled people have been here since the beginning of time. Disabled people will be here until the end of time. At what time will our critical insights be fully recognized? We are urging the working group to make use of our written contributions (in lieu of actual representation) and begin updates to the guidance released February 13, 2021.