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Advocacy

Core to the mission of Independent Living Centers is advocacy! The members of CFILC develop positions regarding issues that impact people with disabilities, and we join our allies in advocating for access and equal opportunities for people with disabilities. To learn about the current issues see below, please contact Dan Okenfuss, CFILC's Public Policy Director.

CFILC and DOnetwork's COVID-19 Disability Community Advocacy and Information Toolkit March 27th, 2021

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This entire page is the toolkit. Keeping scrolling for more! Last updated: 3/27/21.

Updates to the Toolkit include:
• Added IHSS Provider Pay for Vaccine Appointment Assistance (Resources Section).
• Added Statewide Organizations Able to Provide Verification (Advocacy Strategies and Countering Myths Section).
• Added Vaccine Finder (Resources Section).

Introduction



This toolkit is intended to be a disability community information and advocacy toolkit on COVID-19 vaccine access in California. This toolkit is intended to be used by advocates, organizers and others in the disability community.

The goal of this toolkit is to be a resource only, and it is not intended to be medical or legal advice.

At the time of writing, this information is accurate. However, because the COVID-19 pandemic and related vaccines are a rapidly changing system, and the pandemic requires frequent changes to respond to virus transmission rate, much of this information will change. To the best of our ability, we will evaluate the content in this toolkit for both accuracy and completeness, and we will make an effort to note when and where changes have occurred.

If you find any factual inconsistencies, missing information, or would like to give general feedback about this toolkit, please email us at: disabilityorganizing@cfilc.org.


DOnetwork Advocacy Position on COVID-19 Vaccine Access



The DOnetwork believes that it is the right of people with disabilities to receive access to the available COVID-19 vaccines, in an equitable and fully accessible manner, in the location that meets their needs. Additionally, we believe that people with disabilities, as all people, should be given the right to choose when and if vaccination is appropriate.

We understand that some people with disabilities live with “high risk” conditions that make them more susceptible to either contracting the COVID-19 virus or being at severe risk of hospitalization due to COVID-19. The DOnetwork also understands that underserved communities, including non-English-speaking communities, communities of color, rural communities, and communities in economically disadvantaged areas often receive fewer COVID-19 relief resources, including vaccines. We believe that these communities deserve higher priority, both in terms of resources and access to the vaccine.

While the DOnetwork believes strongly that all people with disabilities should be eligible for vaccinations, we also believe that it is in line with our values to prioritize the needs of disadvantaged and “high risk” communities, even within the disability community.



California COVID-19 Vaccine Distribution Process



Vaccine allocation and distribution is a complex process. California is currently reconfiguring the methods by which vaccines will be made available and how they will be distributed. There currently exist several methods for vaccine distribution, and each of these can create separate paths to receiving a vaccine. Below is an outline of the separate processes:

MyTurn.CA.gov (Please call 1-833-422-4255 for phone access).
This website is maintained by the California Department of Public Health. As of now, this is the best website to register on for anyone seeking a vaccine. It is intended to be a “one-stop” place to check your vaccine eligibility and, if available in your region/area, schedule an appointment. (All people looking to be vaccinated should register here first.) The MyTurn website will be working with the state’s Third Party Administrator (TPA), Blue Shield, to provide vaccine allocation. This process is still being developed and it is expected to be fully implemented in early April. Registering on the website will allow individuals to be notified when appointments do become available and allow individuals to state the accommodations that they may need for vaccination.There will also be an opportunity to volunteer at sites operated by MyTurn. To get more information about signing up to be a volunteer at a vaccination site, go to:http://myturn.ca.gov/volunteer

The federal government is currently distributing vaccines directly to certain pharmacies. This is a separate process, as the vaccines are shipped directly from the federal allocations to the pharmacies. The CDC maintains a list of pharmacies participating in this program; however, this list is subject to change frequently. Pharmacies Participating in the Federal Retail Pharmacy Program for COVID-19 Vaccination (Scroll down the page and select “California” for complete list.)

Certain physicians will be contracted through the TPA (Blue Shield) to provide vaccines. We do not currently have a list of physicians but do know that the state is working with the California Medical Association to develop this process.

Additional processes for vaccine access do exist from local community resources.
Currently the County Departments of Public Health do have a role in distributing vaccines. However, the state TPA is expected to transition county processes to the streamlined MyTurn model. The best advice for accessing these systems is to contact the local County Department of Public Health and/or call 211. Keep in mind, in the future, much of this process will be moved to MyTurn and connected partners.

At-home vaccination pilots are occurring in some limited locations for disabled individuals who cannot access vaccine sites. The San Francisco and Los Angeles areas are currently piloting a project for at-home vaccination. Specific information about accessing this system is unavailable at the time of writing, but we will update as soon as we receive more information.

Note: As previously stated, the above information is subject to rapid change. Please contact us if you notice any misleading, incorrect or missing information.



COVID-19 Vaccine Access Advice for Disability Community Advocates



The DOnetwork recommends that every advocate and organizer fully understand both the process and who is currently eligible for vaccination. Currently, because vaccine supply is limited, it is important that we maintain a commitment to equity. We must ensure that people most in need of the vaccine are receiving it as quickly as possible.

Please know that the DOnetwork is working with many partners statewide to ensure that vaccinations happen in an equitable and rapid manner.

The first recommended step for anyone seeking a vaccine is to register on MyTurn.CA.gov or call 1-833-422-4255. This may not result in an immediate vaccine appointment, but it is a good first step. For those who feel that they need vaccination quickly, please take the time to share more about the process.

The next recommended step is to completely understand who is currently eligible for a vaccination. While it is true that “standby” lists may exist in certain communities, these are extremely difficult to navigate, and the DOnetwork is unable to track this method of vaccine access, but we will continue to pass along information as it becomes available.


Beginning March 15, 2021, the State of California Department of Public Health will make vaccines available to certain “high-risk” people with disabilities above the age of 16, in addition to those already eligible through other categories. (See the bulletin here.)

Additionally, last week the State announced that all consumers of Regional Centers, Independent Living Centers, and In-Home Supportive Services are eligible for the COVID vaccine starting on March 15, 2021. Also, people can verify through self-attestation. 

These categories will be vaccinated by healthcare providers at their “clinical judgment,” meaning that some may choose to require documentation. The DOnetwork maintains that providing documentation can create an access barrier and will continue to work on statewide advocacy to encourage self-certification as an option.

The expanded eligibility for those ages 16-64, on or after March 15, 2021, include individuals with one or more of the following conditions:

  • Cancer, current with debilitated or immunocompromised state
  • Chronic kidney disease, stage 4 or above
  • Chronic pulmonary disease, oxygen dependent
  • Down syndrome
  • lmmunocompromised state (weakened immune system) from solid organ transplant
  • Pregnancy
  • Sickle cell disease
  • Heart conditions, such as heart failure, coronary artery disease, or cardiomyopathies (excludes hypertension)
  • Severe obesity (Body Mass Index 2 is greater or equal to 40 kg/m2)
  • Type 2 diabetes mellitus with hemoglobin Al c level greater than 7.5%

OR

If as a result of a developmental or other severe high-risk disability, one or more of the following applies:

  • The individual is likely to develop severe life-threatening illness or death from COVID-19 infection
  • Acquiring COVID-19 will limit the individual's ability to receive ongoing care or services vital to their well-being and survival
  • Providing adequate and timely COVID care will be particularly challenging as a result of the individual's disability.


Please note that these final categories are broad but are intended only for those who are truly “high-risk” as defined by the California Department of Public Health (CDPH), not the DOnetwork. These final categories include people receiving in-home care, such as In-Home Supportive Services (IHSS), services from Regional Centers, and even those receiving care individually paid for or received from family members. As a reminder, the DOnetwork continues to advocate for individuals in all categories to “self-certify” their qualifying disabilities, but if documentation is not a burden, having it available is recommended.

The following organizations are able to assist people with disabilities with receiving documentation, when required:

• Independent Living Centers (Find an ILC in California)
• Regional Centers (for Regional Center Clients)
• IHSS Recipients: Department of Social Services has sent letters to recipients that can be used as verification.

It is also important to know that a person with a disability may also be eligible through other criteria, such as age or employment, as identified in California’s Phase 1A and Phase 1B, Tier 1. (More information on these classes of eligibility are located here).



Advocacy Strategies and Countering Myths



The DOnetwork strongly believes in individual choice, as a part of Independent Living (IL) philosophy. As such, it is up to the individual to decide when and how to receive a vaccination. At the current time, certain factors are difficult to control, because vaccine supplies are limited, and different vaccines do exist. All vaccines currently available have a goal of reducing the chance of serious illness and hospitalization from COVID-19, and it is believed that these vaccines will also help limit the spread of COVID-19. These vaccines are new, and as such, information as to their effectiveness of stopping the spread of the COVID-19 virus is still being studied.

It is important to honor the experience of those who you speak to about the COVID-19 vaccine. Please understand that your personal advocacy should not be used to pressure someone in any way, but rather to provide full and complete educational information, to the best degree possible.

For the latest information from the CDC on the currently available COVID-19 vaccines, please visit the following page:

Different COVID-19 Vaccines | CDC
Additionally, there are many harmful myths circulating about the vaccine. While it is true that the available vaccines are new, each vaccine has been through extensive review as outlined in the above resource from the CDC. The myths that exist are numerous and expanding. The following are resource links to pages compiled from reputable medical sources discussing some of the reported myths:

Myths and Facts about COVID-19 Vaccines | CDC
6 myths about the COVID-19 vaccines — debunked | AAMC
COVID-19 Vaccines: Myth Versus Fact | Johns Hopkins Medicine



Resources



The following resources are trusted information from partners and peers within the disability community. When we go through a process for updating this document, we will add resources as they become available.

FAQ – Covid-19, Vaccines, and Californians with Disabilities - Disability Rights Education & Defense Fund (DREDF)
This is a list of Frequently Asked Questions about the COVID-19 vaccine from DREDF, an organization representing the legal rights of people with disabilities. This document is focused on understanding eligibility of persons with disabilities for vaccination.

Coronavirus - Vaccines | Disability Rights California
This website from Disability Rights California has links to several useful documents related to vaccine advocacy for people with disabilities.

Plain Language COVID Vaccine Information | California State Council on Developmental Disabilities (PDF document)
This PDF document is a plain language explanation of COVID-19 vaccines developed by the State Council on Developmental Disabilities. The target audience is people with intellectual and development disabilities and their families.

COVID-19 Vaccine Availability | VaccinateCA
Please note that this website is not run by healthcare provider or the government. It is still advisable that the person interested in vaccination sign-up at MyTurn.CA.gov first. VaccinateCA is a community resource that can help identify more immediate locations for vaccination access.

From the website: VaccinateCA is a community-driven effort to help Californians learn accurate, up-to-date, verified information about the coronavirus vaccine, so they can learn when they will be eligible and how to take their place in line. Our professionals call medical professionals at hundreds of potential vaccination sites daily, asking them if they have the vaccine and if so to whom they will administer it to and how to get an appointment. We write down what they tell us and publish it to this site.

VaccineFinder - Find COVID-19 vaccine locations near you
From the website: VaccineFinder is a free, online service where users can search for locations that offer vaccinations. We work with partners such as clinics, pharmacies, and health departments to provide accurate and up-to-date information about vaccination services. VaccineFinder is operated by epidemiologists and software developers at Boston Children's Hospital.

IHSS Recipients Only
The California Department of Social Services has issued an All County Letter (ACL) allowing IHSS Providers to be paid for up to 4 hours (2 hours per appointment) for accompanying IHSS Recipients to their appointments.

The following form must be completed by IHSS Providers to receive reimbursement: Vaccine Medical Appointment Form



Connecting with the DOnetwork on COVID-19 Resources and Strategies



The DOnetwork invites the disability community to become engaged with our work. Please follow us on Facebook,Twitter, and Instagram (@DOnetworkorg). Subscribe to the DOnetwork mailing list to receive our newsletters.

Additionally, to join our COVID-19 vaccine advocacy, please send an email with the subject “COVID-19 Vaccine Advocacy” to: disabilityorganizing@cfilc.org.

We encourage any feedback about this document, and please feel free to share widely within your community and networks.



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