As California Makes Age A Bigger Factor In When You Get Vaccinated, People With Disabilities Are Concerned

Californians with disabilities are worried they’ll be overlooked in the state’s vaccine distribution plan, following an announcement from Gov. Gavin Newsom Monday that priority will now be determined primarily by a person's age.

More than 700 disability rights advocates gathered at a virtual town hall meeting Wednesday to voice their concerns about the change. 

“I was sure based on the news reports that people with disabilities would be toward the front of the line to receive the vaccine,” said Tim Jin, a 45-year-old living with cerebral palsy. “[Newsom’s] plan gives priority to people based on their job and age, but so far has neglected to account for the needs of Californians with disabilities. Why would a healthy 50-something get the vaccine before me?”

This week, the state rearranged its vaccine priority list to move people 65 and older to the front of Phase 1B, joining people over 75 and workers in education, food and agriculture and public safety. 

Newsom then indicated that after people in the first tier of Phase 1B are vaccinated, the state will move on to immunizing people based on age, and not on the other factors initially considered in the priority plan, such as occupation and medical fragility. 

He said going by age group is the fastest way to get the vaccine out to the most people. 

“While we’re proud of the framework we put out … we recognize it has advantages and it has disadvantages as it relates to speed and efficiency,” Newsom said.

Initially, only people age 75 and older were in the first tier of Phase 1B, and people ages 65 to 74 were in the lower tier alongside transportation workers, homeless individuals and people who are incarcerated. Healthy people ages 50 to 64 and younger people with underlying medical conditions that put them at risk of severe COVID-19 are in Phase 1C.There isn’t currently an estimate on when this group will be eligible for the vaccine. 

The state’s vaccine website says California is currently in Phase 1B. But whether or not your county has moved on from Phase 1A — health care workers and long-term care facility residents — depends heavily on supply and demand in your county. Find out more about the phase and tier system here.

But disability rights advocates say they should have been bumped up, too. 

Judy Mark, president of a nonprofit called Disability Voices United and mother to a 23-year-old with autism spectrum disorder, says advocates are concerned that after seniors and frontline workers are vaccinated, the state will begin moving down the age categories without paying attention to underlying conditions. The state has not yet defined which medical conditions make someone eligible for early access to the vaccine.

“While that’s a straightforward process, it’s leaving a lot of people out,” she said. ”It just makes no sense … It doesn’t follow the science, either. Because we know that people with disabilities have significantly higher rates of hospitalization and death.”

An NPR analysis of data from New York and Pennsylvania found that people with intellectual disabilities who contract COVID-19 die at a higher rate than other residents. 

Advocates say people with severe disabilities should be bumped up to the first tier of Phase 1B, alongside people age 65 and older, making them next in line for the vaccine. The state has not yet clarified exactly how Monday's announcement changes the current priority plan, and which groups will be eligible next after people older than 65 and certain frontline workers are vaccinated. 

Aaron Carruthers is one of five disability advocates on the state’s Community Vaccine Advisory Committee, which has been meeting since November to lay out priority groups. He says people with disabilities should be given special consideration, and that the state should be making an effort now to identify them and prepare to offer them doses as supply allows. 

“We feel this can be a way that takes an equity approach, that takes an index approach, to use people receiving home and community-based services as that marker,” he said. “That marker to say ‘this person’s disability is severe enough that it’s very likely they’d be adversely impacted.’”

Some other states, such as Oregon, have included people with intellectual and developmental disabilities and their caregivers in Phase 1A, and are operating vaccination sites specifically for this group. 

“Many other states are pushing, particularly people with intellectual and developmental disabilities, to the front of the line,” said Mark, with Disability Voices United. “We just don’t understand why California doesn’t have a plan like that.”

There are also complaints coming from people in the second tier of Phase 1B, such as workers in transportation and manufacturing and people who live or work in congregate settings such as homeless shelters, jails and prisons. 

Moving Californians over age 65 into the first tier of Phase 1B, and basing eligibility on age after that, could mean longer wait times for these workers. Transit employees wrote a letter to the governor this week asking to be elevated for consideration alongside people age 65 and older. 

California Health and Human Services Secretary Dr. Mark Ghaly said in a press briefing Tuesday that occupation may not play as large a role in eligibility going forward. 

“Younger individuals who are in professions or in situations where they aren’t nearly as exposed as some of the other high-exposure industries will end up waiting a little longer,” Ghaly said. “There are gonna be some sectors of our population that don’t come to the front of the line as quickly as some others.”

Groups representing people of color have also called for racial equity in vaccine distribution, fearing the ZIP codes where infection and death rates from COVID-19 have been highest will be the last to get shots. Black and brown Calfornians have been hit hardest by the virus, with rates of death and infection above the statewide average. State health officials have talked about allocating public health resources based on an equity metric called the Healthy Places Index, but have yet to share concrete information about how this affects vaccine priority groups. 

Newsom has come under fire for moving slowly on vaccine distribution, and some lawmakers have criticized him for spending too much time deliberating over who to give it to and not enough time actually giving it out.