Wanda and Rick Felty plan their days around keeping their 32-year-old daughter safe from the coronavirus. They don’t go to restaurants or have family members over to their home. They limit grocery shopping trips to once per week.
The risks are high.
Their daughter, Kayla Felty, lives at home and requires almost constant care. She is blind, nonverbal and is considered to have a severe intellectual disability.
Kayla Felty and other Oklahomans with intellectual and developmental disabilities are three times more likely than the general population to die from COVID-19, according to one study.
“I can’t imagine what COVID-19 would do to her,” Wanda Felty said. “Our fear is great.”
But people with disabilities who live at home have been left out of high priority status in Oklahoma’s vaccine distribution plan.
About eight weeks after Oklahoma started its vaccine rollout, people with developmental disabilities, their caregivers and families are frustrated and disheartened they aren’t being prioritized in the state’s plan. Meanwhile, states like Texas, Tennessee, Missouri and Indiana are placing those individuals in higher priority groups.
Like most states, Oklahoma is distributing the vaccine in tiers. The state’s four-phase plan includes adults with comorbidities in phase two — the next group in line for a shot — but there is no explicit mention of those with intellectual or developmental disabilities.
In late December, the Centers for Disease Control and Prevention added Down syndrome to its list of a dozen health conditions that carry an increased risk of severe illness from COVID-19. If infected, people with Down syndrome are five times more likely to be hospitalized and 10 times more likely to die, research shows.
Following concerns from disability advocates and media inquiries from The Frontier, the Oklahoma State Department of Health last week said adults with Down syndrome will be added to the next group in phase two to get the shot, along with adults with comorbidities. The agency will update its vaccine registration portal later this month to allow people to indicate they have Down syndrome, said Keith Reed, deputy commissioner for the Oklahoma State Department of Health.
However, there’s no plan to include other intellectual or developmental disabilities, he said in an email.
“Unfortunately, until we have sufficient vaccine supply, we have to continue to be restrictive in defining some of these groups,” Reed said in the email. “Our hope is that vaccine supply will open soon and this more narrow definition will no longer be necessary.”
Right now, Oklahoma is in phase two of its plan, vaccinating health care workers, staff and residents of long-term health facilities, and adults over 65.
If Kayla Felty lived in a group home for people with intellectual disabilities, she would already be eligible for a shot. Those homes are included in phase one of Oklahoma’s plan.
Though her disability didn’t make her eligible for a shot, the fact that Kayla Felty is considered overweight did, her mother said. The state lists obesity as a comorbidity in phase two.
Wanda and Rick Felty would be considered caregivers in phase two of Oklahoma’s distribution plan and eligible to receive the vaccine if they were paid for taking care of their daughter. But unpaid family caregivers aren’t included in that group.
Still, Oklahoma is getting shots into arms quicker than most states.
On Wednesday, Oklahoma was No. 6 in the U.S. for first doses administered per 100,000 people, according to the CDC.
As of Tuesday, 372,053 Oklahomans had received the first dose of the vaccine — about 12 percent of Oklahomans older than 16, according to the state Health Department.
RoseAnn Duplan, the policy and planning specialist at Oklahoma Disability Law Center, said she’s pleased the state will prioritize people with Down syndrome, but the move falls short of what is necessary to protect Oklahomans with intellectual or developmental disabilities.
Duplan is also a member of the committee that helps advise the state Health Department on vaccine distribution.
The Disability Law Center is concerned that people with other disabilities are being excluded, she said. The omission could give at-risk Oklahomans the lowest priority in the state’s distribution plan, the last group to receive the vaccine. They should be included in the second phase, she said.
“We need to protect those vulnerable people,” Duplan said.
Oklahoma Disability Law Center representatives joined the task force late into the state’s distribution planning process, about two months ago, after many decisions had already been made, Duplan said.
“As a state we just need to do a better job at the beginning when we’re planning,” she said. “There needs to be folks from the disability community at the table. It’s a lot harder to change once there’s a plan already in place.”
Some parents and caregivers have been confused about where people with Down syndrome fall in the state’s plan.
Lori Wathen is worried that her 18-year-old son Reis could fall severely ill with COVID-19.
Reis has Down syndrome and lives at home with his mother. Under Oklahoma guidelines, he initially qualified for phase three of the state’s vaccine distribution plan, but Lori recently was able to re-register him into phase two after the Oklahoma State Department of Health adjusted state guidelines.
Wathen was relieved.
Reis goes to school in Moore in a contained classroom, limiting exposure from the general student body.
Before the pandemic, the teen enjoyed taking cooking classes, competing in swimming with Special Olympics Oklahoma and playing in other group sports. Wathen said she hopes her son can return to some sort of normalcy later this year.
“He enjoys doing a lot of things. He’s used to being pretty busy,” she said.
Oklahoma’s online vaccine registration portal asks users if they have a comorbidity, but right now it doesn’t allow them to indicate they have a disability, such as Down syndrome. Users can choose from a list of 10 conditions, including asthma, heart disease, obesity or a suppressed immune system, which would land them in phase two of the state’s distribution plan.
Until it is added to the portal, Oklahomans who have Down syndrome can select an option that says they have a comorbidity, Reed said. If they’ve already signed up, they can re-register.
For Felty, vaccine prioritization is just another example of how people with disabilities have been left out of pandemic response efforts by the federal government and state health department.
When Congress passed a $900 billion COVID-19 relief package in late December, it didn’t include aid for home- and community-based services. Adults with disabilities, such as Kayla Felty, who are considered dependents on their parents taxes were not eligible for stimulus payments.
“My concerns are families are not being honored and respected for the level of care they’re giving their loved ones especially during a pandemic. … Families chose to keep their loved one at home and provide care thinking or believing the government was going to help them do that,” Felty said.
“And this pandemic has shown me, I don’t think they care.”