The pandemic revealed many vulnerabilities in healthcare, especially among the most vulnerable.
This month, the Arizona Developmental Disabilities Planning Council released its findings in “COVID-19 Impact on the Disability Community.”
The review highlighted a 2021 U.S. study of more than 64 million people across 547 healthcare organizations that showed a link between intellectual or developmental disabilities and COVID-19.
“Having an intellectual disability was the strongest risk factor for presenting with a COVID-19 diagnosis and the strongest independent risk factor other than age for COVID-19 mortality,” the study found.
Ahwatukee resident Michelle Thorne is the founder and executive director for Care 4 The Caregivers, a 501(c)(3) nonprofit that provides emotional, physical and educational support to those raising a child with a disability.
“This population was very overlooked when it came to the vaccine rollout,” Thorne said. “I think that had a detrimental effect to the population in whole.”
Along with having two children diagnosed with autism, Thorne said her background as a geneticist also drew her to this review about those with intellectual or developmental disabilities.
“The pandemic brought out a lot of different inequities that exist within our system, not only who gets priority to life saving vaccines, but also who gets priority to care,”
Thorne worked as a geneticist at Translational Genomics Research Institute (TGen), a non-profit genomics research facility, until she opted to care for her children.
Despite the Centers for Disease Control and Prevention’s changes in guidelines this month, Thorne said the disabled community still faces an increased threat from COVID-19.
“We still have families who are going into the hospital because their kids are getting COVID,” Thorne said. “And because of their comorbidities are having a harder time fighting it off.”
Thorne said she wants to help people understand the mRNA vaccine and reduce vaccine hesitancy because it remains the best way to protect this vulnerable community.
“It’s just a different way of creating an immune response,” Thorne said. “But it allows researchers to be a little bit more targeted and specific with what the vaccine is going to target.”
On July 17, the CDC released a study that looked at hospitalization rates among Medicare recipients from Jan. 1, 2021, to Nov. 20, 2021.
The data showed a higher rate of COVID occurrence and hospitalization in those who were eligible for aid because of a disability over those who were age-eligible.
The study said this further highlights the need for greater levels of vaccination and COVID-19 prevention among the disabled community.
“I think that we have to look at all forms of life being equal, and being deserving of medical treatment,” Thorne said.
In March, Gov. Doug Ducey signed House Bill 2659 into law that bans providers from discriminating against people with disabilities in organ transplant decisions.
Gina Johnson knows all too well the adversity the developmentally disabled have faced during the pandemic given that her son David, 38, has Down Syndrome.
Johnson is the founder and executive director of Sharing Down Syndrome Arizona, a nonprofit in Mesa that advocates for people with Down Syndrome and supports families in their journey after diagnosis.
Johnson said if a healthy person presented to an emergency room with COVID-19 symptoms at the same time as a person with Down Syndrome, the healthy would be treated first.
“Now that sounds so awful,” Johnson said. “And it is, but I know parents that have dealt with that.”
Johnson said she holds nothing against healthcare providers because she understands the difficult decisions they faced in the thick of the pandemic.
“This is nothing against the medical people,” Johnson said. “They’re doing their level best and they were slammed.”
Johnson said she knows that the increased morbidity in this community comes down to the fact that diseases such as COVID-19 overwhelm their immune system and not being overlooked for care.
“I do feel it goes against our kids because our kids are already compromised,” she said.
While great strides have been made such as with the passing of HB 2659, Johnson said people like her son still face struggles in receiving necessary care.
“I’ve seen a lot of strides for and I’m so grateful,” Johnson said. “But I know we’re not all the way there yet on serving people with disabilities.”