California could vaccinate those with disabilities next. SLO County mothers say it’s a must
When Melanie Cleveland got the chance to be vaccinated against coronavirus, the San Luis Obispo single mom jumped at the opportunity.
“I felt like I was one of the first ones,” said Cleveland, a former Tribune reporter.
But when she tried to get her sons with disabilities, Alex, 28, and George, 27, vaccinated as well, she was “met with a wall.”
“COVID has knocked down a number of people we know. I feel the COVID noose is tightening,” Cleveland wrote via email. “It is only a matter of time until some barrier is broken and the boys contract the disease.”
And she is not alone in that fear.
Advocates, including Cleveland, have battled for those with disabilities and medical conditions to be prioritized after Gov. Gavin Newsom announced Jan. 25 that the state would move its vaccination strategy to an age-based eligibility system, rather than one that would have put those with high-risk conditions next.
The age-based strategy, Newsom said Jan. 25, would “allow use to scale up much more quickly to get vaccines to impacted communities much more expeditiously,” Newsom said when announcing the change.
However, many said that strategy is ignoring other key risks at play. That pushback may lead to some change, according to the Sacramento Bee.
“Age is not the only factor in determining risk,” said Alice Wong, a disabled activist in San Francisco who had started a #HighRiskCA hashtag on Twitter, in a recent video. “This decision by the Newsom administration is an act of violence and erasure toward groups disproportionately impacted by the pandemic.”
Data reviewed by a state working group showed that those with underlying medical conditions overall were more than three times likely than others to be hospitalized from COVID-19. Another study reviewed by the group showed that those with disabilities were two or three times more likely to die from COVID-19.
San Luis Obispo County is currently vaccinating residents ages 75 and older as well as healthcare workers and long-term care facility residents. Next in line for vaccines in San Luis Obispo County are people ages 65 to 74, as well as farm workers and teachers.
“At the present, that group (people with disabilities) is not considered to be a part of the Phase 1B,” county Public Health Officer Dr. Penny Borenstein said Wednesday. “I know that there is a lot of conversation about that at the state level, and we’re told to stay tuned for possible reconsideration.”
SLO County mothers advocate for vaccines for children with disabilities
Cleveland’s sons were born with a rare, metabolic, progressive disorder that took years to diagnose. They cannot walk or speak.
Cleveland’s daughter, Dr. Adrienne Sabety, is a health economist and assistant professor at the University of Notre Dame. Sabety wrote in a letter that her brothers’ underlying medical conditions also include cerebral palsy, epilepsy, retinal pigmentosa, thyroid disorders and Crohn’s disease.
Cleveland said Sabety, who is her oldest child, returned to San Luis Obispo during the pandemic to assist in the care of her two brothers.
“Because of their degenerating health and intellectual disabilities, what was once a family home has become in effect a 24-hour care facility with at least two people on site, night and day, to look after my sons,” Cleveland wrote in a follow-up email to The Tribune.
However, unlike employees and residents of long-term care facilities, her children aren’t at the top of the list for vaccinations.
“They have fallen out of the loop for getting a vaccine,” Cleveland said. “They are giving shots to residents in long-term care facilities and group homes, but since my sons are not in that, since I opted to care for them on my own, they are not able to get a shot.”
Cleveland said she typically cares for her sons with the help of six other caregivers that were hired through Maxim, an in-home care employer.
Now, it is just her and two other caregivers working overtime to provide around-the-clock assistance to her sons.
Cleveland said when the COVID-19 vaccine rolled out for health care workers, she asked that all six caregivers, including herself, be vaccinated. Three declined, she said, leaving her with a “skeleton crew.”
“I told them I didn’t want them working here if they weren’t vaccinated, so they’re gone,” Cleveland said. “Now I don’t have enough people to cover.”
At this time, the federal Centers for Disease Control and Prevention said it does not have enough information to determine whether receiving coronavirus vaccines will prevent people from spreading the virus.
However, Cleveland said a vaccinated staff is the best protection she can offer her sons at this point.
“I felt I had no choice but to ask that they no longer work in the home, until, at the very least, my sons can be protected by a vaccination,” she added in an email.
Cleveland said she has reached out to the San Luis Obispo County Public Health Department, the local Coronavirus Vaccine Task Force and the Tri-Counties Regional Center, which provides support for more than 14,000 people with developmental disabilities on the Central Coast, to get her sons vaccinated sooner. But so far nothing has come of her attempts.
“The Public Health Authority is very well intentioned,” she said, “but I haven’t been able to get someone to re-think this policy in order to cover my sons, I’ve only been told they’re following state guidelines.”
Avila Beach resident Liz Guho-Johnson said she, too, has been running into “closed doors.”
Guho-Johnson’s 31-year-old daughter, Collette Johnson, has Down syndrome.
On Dec. 23, 2020, the CDC added Down syndrome to the list of medical conditions that have been shown to increase the risk of severe illness from COVID-19.
Guho-Johnson said she has written letters to Newsom, Tri-County Regional Center and the county Public Health Department in hopes of shedding light on a “life or death” situation.
“This has become almost a full-time job for me, trying to navigate where to go, trying to get in the back door, so to speak, to get her vaccinated,” Guho-Johnson said.
Despite being turned down at every avenue, she has continued to push for her daughter.
“You advocate and advocate,” Guho-Johnson said. “You don’t take no for an answer. You keep doing it until it happens. You beg people. You spread the word.”
Guho-Johnson said getting the COVID-19 vaccine would not only give her daughter more protection against the virus, but it could also improve her mental health.
In the past year, Collette Johnson has had to stop her daily social activities and stay home, where she is shielded from the virus.
Paso Robles resident Mary Ellen Felton shared a similar struggle with her 35-year-old son, Sean Felton, who has Down syndrome and asthma.
Before the coronavirus pandemic, Sean Felton attended a day program that provided him with a routine and activities. He has been limited to his home because he is at high risk for contracting the virus.
“It’s confusing because he doesn’t really understand why he’s not going, and he misses that. It’s a big part of his day,” Mary Ellen Felton said of her son.
“I see more regression almost. He’s going backwards a little bit because he doesn’t have that stimulation every day,” she added.
According to Felton, she, her husband and her older son were able to get vaccinated against coronavirus because they are Sean’s caregivers.
She said it was “a bit of a rigmarole” to get vaccinated as in-home care providers, but they were able to do so, while Sean himself was not.
“He’s the one at the most risk,” Felton said. “So that’s kind of puzzling to me.”
Until her younger son is vaccinated, she said the family will have to continue to use caution.
Disability advocates push for inclusion in next vaccine phase
California on Wednesday looked again to tweak who gets the COVID-19 vaccine next, this time by putting those with disabilities or medical conditions next in line after older residents and some essential workers, according to a proposal by a key state panel.
The Community Vaccine Advisory Committee’s work is intended to inform state officials as they make final vaccination priority decisions.
The new plan it reviewed Wednesday was drafted after the state’s pivot to an age-based vaccine system drew intense criticism from those with disabilities or underlying medical conditions who face higher risks of hospitalization and death from COVID-19.
Still, details aren’t clear — the plan doesn’t spell out which disabilities or medical conditions would qualify.
Some medical conditions, such as history of stroke, did not correspond to higher rates of hospitalization from COVID-19, while other conditions such as severe obesity and diabetes did, according to the data reviewed by the working group.
Those receiving services for developmental or intellectual disabilities in California were also less likely to be hospitalized from COVID-19, according to a different set of data reviewed by the group.
The change would also only apply to those vaccinated at hospitals or other clinics, where medical status could be verified — not at mass vaccination sites.
“The proposal that was presented, I think it’s the best attempt to thread the needle based on science,” said Aaron Carruthers, the executive director at the California State Council on Developmental Disabilities who is a member of the committee. But “it’s very complicated. It’s very confusing. I think it’s very difficult to implement.”
Prioritizing groups with disabilities will also ensure that COVID-19 won’t interfere with their ability to get ongoing care for their conditions, state epidemiologist Dr. Erica Pan said.
Still, Pan said the state has yet to define which conditions would qualify for earlier access to vaccines.
This story was originally published February 5, 2021 at 5:00 AM.
