FAQ – Covid-19, Vaccines, and Californians with Disabilities

February 26, 2021

What do the data say about the impact of COVID-19 on people with disabilities?

Because our society does not collect disability data in an accurate or comprehensive way, it is difficult to describe with precision the impact of COVID-19 on people with one or more disabilities. The CDC includes a list of pre-existing conditions that place people of all ages at increased risk of severe illness from COVID-19.[1] We know that people with intellectual or developmental disabilities are at heightened risk of severe illness and death from COVID-19.[2] A recent study concluded that people with schizophrenia are at significantly increased risk of mortality from COVID-19.[3] A government study of more than 50,000 COVID deaths in England last year found a significantly increased risk of death for people with disabilities even when accounting for age and residence (such as nursing homes).[4] We know that people with disabilities who rely upon certain disability and healthcare services generally must expose themselves to close contact with others who are not in the same household.

An analysis by Fair Health using the largest private healthcare claims database in the United States found that people under the age of 70 with various disabilities and pre-existing health conditions including intellectual and developmental disabilities, cancers, mobility impairments, and seizure disorders have substantially increased risk of death from COVID-19. The analysis also found that individuals with multiple pre-existing conditions experienced an even greater risk of death. A person with four pre-existing conditions was six times more likely to die; a person with five was 14 times more likely.[5]

H. Stephen Kaye, Ph.D., published two papers setting out his analysis of mortality risk among recipients of home and community-based services. He found that HCBS recipients between 45 and 64 years of age appear to be at greater mortality risk than the general community-resident population between 65 and 74 years of age. He concludes that this elevated mortality risk justifies increasing the vaccination priority for HCBS recipients under age 65 to equal that of the general non-institutionalized population age 65 and older.[6]

Did the California state vaccine allocation guidelines change what they said about people with disabilities and access to the vaccine? What happened?

Yes. Initially, California set out several phases or priorities for vaccine allocation. On December 5, 2020, the state launched the first phase (Phase 1a) for people who work in any role in direct health care or long-term care settings, and residents of skilled nursing facilities, assisted living facilities, and similar long-term care settings for older or medically vulnerable individuals.[7] The next priority (Phase 1b) was people over 75 and then people over 65, and people in certain occupations.[8] Beginning January 22, 2021, the state recommended vaccinations for people 65 years and older.[9] People with medical conditions or disabilities that put them at high risk for severe illness or death were supposed to be in the next phase (Phase 1c).[10]

On January 25, 2021, Governor Gavin Newsom upended this plan by announcing that vaccines would be rolled out entirely based on age.[11] This was projected to delay vaccine access until at least June for thousands of high-risk disabled Californians younger than the announced age limit.

The California disability community, including the disability community representatives on the California Vaccine Advisory Committee (CVAC), protested the end of any prioritization for high-risk disabled Californians, and presented all available data about the grave impact of COVID-19 on people with certain disabilities.

About three weeks later, on February 12, 2021, the California Department of Public Health issued a new provider bulletin stating that beginning March 15, 2021, as vaccine supplies allow, certain disabled people aged 16 to 64 at particular risk for bad outcomes from COVID-19 will be eligible for vaccination.[12]

Under the February 12, 2021 CDPH provider bulletin, which disabled people can get vaccinated beginning March 15, 2021?

Under the latest provider bulletin, there are two groups of disabled people aged 16 to 64 who will be eligible for vaccination on March 15, 2021:

  • Individuals who are “at the very highest risk for morbidity and mortality from COVID-19 as a direct result” of one or more “severe health conditions,” which are listed (Health Conditions Group); OR
  • People with “developmental or other severe high-risk disability” who are at risk of certain adverse outcomes, which are listed (High-Risk Disability Group).

Which “severe health conditions” are listed for the Health Conditions Group?

These are the “severe health conditions” listed in the February 12, 2021 provider bulletin:

  • Cancer, current with debilitated or immunocompromised state
  • Chronic kidney disease, stage 4 or above
  • Chronic pulmonary disease, oxygen dependent
  • Down syndrome
  • Immunocompromised 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 40 kg/m2)
  • Type 2 diabetes mellitus with hemoglobin A1c level greater than 7.5%

The conditions listed by CDPH are a subset of those listed by the CDC on its website as placing people at increased risk of severe illness from COVID-19.[13]

Are there any other “severe health conditions” that count for the Health Conditions Group?

Right now, probably not. But the provider bulletin states that “[t]he list of eligible conditions is subject to change as additional scientific evidence is published and as CDPH obtains and analyzes additional state-specific data.”[14]

The CDPH list is a subset of a list published by the CDC. The CDC website includes the following statement about its list of conditions:

We are learning more about COVID-19 every day. The below list of underlying medical conditions is not exhaustive and only includes conditions with sufficient evidence to draw conclusions; it is a living document that may be updated at any time, subject to potentially rapid change as the science evolves.[15]

If I have one or more of the listed conditions for the Health Conditions Group, does that mean that I am at “at the very highest risk for morbidity and mortality from COVID-19 as a direct result” of my condition(s)?

Probably yes. The bulletin states that “healthcare providers may use their clinical judgment to vaccinate individuals age 16-64 who are deemed to be at the very highest risk for morbidity and mortality from COVID-19 as a direct result of one or more of the [listed] severe health conditions[.]”[16]

What adverse outcomes are listed for the High-Risk Disability Group?

These are the adverse outcomes listed in the February 12, 2021 provider bulletin:

  • 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

What are some examples of people with “developmental or other severe high-risk disability” who are “likely to develop severe life-threatening illness or death from COVID-19 infection”?

The CDPH has not given any guidance yet on what this means. Based on what we know so far, we think that the following people may fall into this description:

  • People with developmental or intellectual disabilities.
    • Developmental disabilities include autism, cerebral palsy, muscular dystrophy, spina bifida, and additional disabilities acquired before age 22
  • People with schizophrenia.
  • People receiving Regional Center services.
  • People receiving In-Home Supportive Services.
  • People receiving other kinds of Home- and Community-Based Services.
  • Disabled people who rely on paid or unpaid in-home caregiving.
  • A person with a significant disability that places them at high risk for life-threatening outcomes or death from COVID-19, even if the disability is not specifically listed anywhere or studied yet.
  • A person with multiple pre-existing conditions that in combination put them at high risk for life-threatening outcomes or death from COVID-19. These might include conditions analyzed in the Fair Report, and less severe cases of the conditions listed for the Health Conditions Group.

What are some examples of people with “developmental or other severe high-risk disability” for whom “[a]cquiring COVID-19 will limit the individual’s ability to receive ongoing care or services vital to their well-being and survival”?

The CDPH has not given any guidance yet on what this means. Based on what we know so far, we think that the following situations may fall into this description (which overlap with one another and with categories discussed previously):

  • A disabled person relies upon in-home care providers to live in their community if the disabled person acquires COVID, these providers will not enter the home.
  • A disabled person relies upon public transit, taxis, rideshare, or a supporter’s car to get to necessary medical tests or medical care if the disabled person acquires COVID, they will not be able to get transportation to access necessary care.
  • A disabled person needs regular treatment from outpatient facilities (e.g. aqua-therapy, radiation, physical therapy) to treat cancer, or to maintain current levels of functioning, or to alleviate chronic pain if the disabled person acquires COVID, their treatment will be postponed or cancelled.

What are some examples of people with “developmental or other severe high-risk disability” for whom “[p]roviding adequate and timely COVID care will be particularly challenging as a result of the individual’s disability”?

The CDPH has not given any guidance yet on what this means. Based on what we know so far, we think that following situations may fall into this description (which overlap with one another and with categories discussed previously):

  • A disabled person has difficulty keeping a mask on their face due to I/DD if they needed COVID treatment in the hospital, they would have trouble keeping an oxygen mask on and maintaining their oxygen saturation;
  • A disabled person is nonverbal if they acquired COVID or needed COVID treatment, they would not be able to communicate about the onset of symptoms or the worsening of the disease;
  • A disabled person needs to be accompanied by a supporter in the hospital to access medical treatment if the disabled person needed COVID treatment, it would be difficult to get the supporter into the hospital and to keep supporter safe (because the disabled person has COVID), and the disabled person would have difficulty accessing effective treatment;
  • A disabled person relies upon a CPAP or BiPAP due to their disability if they needed COVID treatment, they would require a specialized negative-pressure unit so that they could continue to use their own CPAP or BiPAP. These units are not available in all hospitals.
  • Disabled people and higher weight people already face bias by physicians.[17] During COVID-19, this baseline reality has been exacerbated by the prospect that people with disabilities and higher weight people will be denied lifesaving care during spikes in hospitalizations under “crisis standards of care.” We believe that these barriers should be considered as part of why accessing COVID care would be particularly challenging for a disabled or higher weight person.

What kind of documentation will I need to show that I am in the Health Conditions Group or the High-Risk Disability Group for scheduling an appointment or receiving a vaccine?

The CDPH has not given any guidance on this yet, and practices may vary widely among counties, vaccine providers, and vaccine sites.[18] In some other states that have started vaccinating people younger than 65 with certain medical conditions, people are providing some kind of documentation or signing a certification. But we do not know yet how it will work in California.

You may want to have “proof” ready just in case. This could include

  • Your personal statement about why you fit into one of the groups
  • A statement from a family member, household member, or supporter about why you fit into one of the groups
  • Medical records or insurance documents showing your medical status
  • A letter or form from your doctor stating your medical status
    • It is possible that healthcare providers or healthcare-related organizations and agencies will provide template letters or forms for patients who have one or more of the listed statuses
  • Documentation showing that you receive Regional Center services
  • A Notice of Action, timesheet, payroll statement, or other document showing that you receive In-Home Supportive Services

But as of today, we do not know what will be required in different places or contexts.

If you are already a member or a regular consumer of a vaccine provider (e.g., Kaiser, Walgreens, Federally Qualified Health Center) that has your medical records, and the records establish that you have one of the listed health conditions, or that you fit into the high-risk disability group, you should check that the provider has access to your health records and explicitly ask if you need to bring additional documentation with you.

What about caregivers for people with disabilities? Are caregivers prioritized for vaccination?

Caregivers who are in the IHSS program, and family caregivers for people with developmental or intellectual disabilities (such as people eligible for Regional Center services), are explicitly mentioned by state agencies as having priority under the state guidelines.[19] These caregivers are eligible to be vaccinated now.

Other types of in-home caregivers or personal care attendants should also be eligible to be vaccinated now as healthcare workers, but some vaccine providers may not know whether or how to process these caregivers for vaccination.

I am a disabled person over age 64 but I am having trouble getting vaccinated what can I do?

There are different vaccine sites and clinics that are prioritizing eligible people with disabilities. This means that you may be able to get help scheduling an appointment or getting a vaccine through one of these sites or clinics. Sometimes this includes giving you a code to use when you book your appointment. You can learn more about these options using the list of resources listed at the end of this FAQ.

I am a high-risk disabled person younger than 65 do I have to wait until March 15?

Probably yes. There are a few disabled people younger than 65 who have been vaccinated. Sometimes these vaccinations occurred when individuals accompanied family members or care providers to a vaccine site. Sometimes these vaccinations were scheduled with set-aside codes. But state-wide, the vast majority of high-risk disabled people younger than 65 will not be eligible for vaccination on that basis until March 15.

How can I learn more about the vaccine for Californians with disabilities as we get closer to March 15?

You can learn more by using the following resources:


[1] Centers for Disease Control and Prevention, People with Certain Medical Conditions.

[2] CommunicationFIRST, Are AAC Users at Greater Risk of Dying from COVID? (Updated Dec. 23, 2020) (reviewing nine studies published between May and December 2020, finding that people with intellectual or developmental disabilities are between 1.7 and 16 times more likely to die from COVID if they get it than those who do not have I/DD).

[3] Katlyn Nemani, M.D., et al., Association of Psychiatric Disorders With Mortality Among Patients With COVID-19, JAMA (Jan. 27, 2021); see also Victor Mazereel, et al., COVID-19 vaccination for people with severe mental illness: why, what, and how? The Lancet (Feb. 3, 2021) (discussing studies).

[4] Office for National Statistics, Updated estimates of coronavirus (COVID-19) related deaths by disability status, England: 24 January to 20 November 2020 (Feb. 11, 2021) (reviewing study of population aged 30 to 100, and in all residential settings); see also BBC, Covid: Disabled people account for six in 10 deaths in England last year ONS (Feb. 11, 2021).

[5] FAIR Health, White Paper, Risk Factors for COVID-19 Mortality among Privately Insured Patients: A Claims Data Analysis (PDF) (Nov. 11, 2020); see also n. 5, infra.

[6] H. Stephen Kaye, Ph.D, COVID-19 Mortality Risk for Recipients of California In-Home Supportive Services (IHSS) and Services from the California Department of Developmental Services (DDS) (PDF) (Jan. 31, 2021) (discussing FAIR analysis); H. Stephen Kaye, Ph.D., Elevated COVID-19 Mortality Risk Among Recipients of Home and Community-Based Services: A case for prioritizing vaccination for this population (Feb. 11, 2021) (same).

[7] California Department of Public Health, CDPH Allocation Guidelines for COVID-19 Vaccine During Phase 1A: Recommendations (Dec. 5, 2020.

[8] Internet Archive, California’s COVID-19 Vaccine Plan (Jan. 7, 2021).

[9] California Department of Public Health, Revision of Allocation Guidelines for COVID-19 Vaccine (with notation: These guidelines are no longer in use).

[10] See n. 7, supra.

[11] Office of Governor Gavin Newsom, To Improve Statewide Vaccinations, Governor Newsom Announces Actions to Simplify, Standardize and Address Supply Needs (Jan. 25, 2021).

[12] California Department of Public Health, Provider Bulletin to All vaccinators and local health departments (Feb. 12, 2021).

[13] See n. 1, supra.

[14] See n. 11, supra.

[15] See n. 1, supra.

[16] See n. 11, supra.

[17] Lisa I. Iezzoni, et al., Physicians’ Perceptions Of People With Disability And Their Health Care, Health Affairs (Feb. 2021) (abstract); Rebecca Sohn, Large majority of doctors hold misconceptions about people with disabilities, survey finds, STAT (Feb. 1, 2021); Liora Engel-Smith, Fat bias at the doctor’s office takes a serious toll (Feb. 2, 2021).

[18] As one example, Alameda County is requiring the following documentation for family caregivers: a letter from the Regional Center caseworker or a letter signed by a “qualified healthcare provider,” as defined. See Alameda County Health Care Services Agency, COVID-19 Vaccination Instructions for Family Caregivers (PDF) (Feb. 16, 2021).

[19] In-Home Supportive Services, COVID-19 Vaccines in California (PDF) (updated Jan. 8, 2021); California Department of Developmental Services, To Whom It May Concern (PDF) (Jan. 13, 2021); California Department of Public Health, Updated COVID-19 Vaccine Allocation Guidelines (Feb. 13, 2021).