Over two decades ago, Kasey Kittell opened Sara Hart Weir’s eyes to a population of people who are often overlooked.
Kittell was born with Down syndrome, a condition in which a person has an extra chromosome that can cause a range of developmental and intellectual disabilities. The two met when Kittell was entering high school and Weir became her peer mentor to help her with the transition.
Their relationship laid the foundation for what would become Weir’s life’s work advocating for people with disabilities. Weir and Kittell became close friends, with Weir later becoming Kittell’s co-guardian.
Years later, Weir became president and CEO of the National Down Syndrome Society.
In January, Weir was brought on by the state of Missouri to help ensure those with disabilities, like Kittell, don’t get left behind during the rollout of the COVID-19 vaccine.
But Kittell won’t get the chance to receive the vaccine or spend time with Weir once the pandemic is finally over. Just weeks after Weir took on her new role, Kittell died of COVID-19 and pneumonia — four days after she was admitted to the hospital.
She was 36 years old.
“Her little lungs and her little heart just kind of started to give up with the pneumonia and COVID,” Weir said. “It’s still very, very, very shocking.”
For Weir, it has made her work even more necessary.
“She hadn’t had the vaccine yet, or had access to it in her group home in Kansas, and I think it just puts everything into perspective,” Weir said, “and all the important work that we’re doing in Missouri… to get the vaccine to the people that need it the most.”
Weir joined Missouri’s Department of Health and Senior Services as a special advisor for COVID-19 last month to provide expertise and advocate for the rights and well-being of people with disabilities amid the rollout.
During her time at the National Down Syndrome Society, Weir played a major role in the passage of the ABLE Act, which created tax-free savings accounts for people with disabilities. Her work advocating for people with disabilities was central to her ultimately unsuccessful campaign for Kansas’ 3rd Congressional District last year.
Weir was brought on through an initiative between the Centers for Disease Control and Prevention and the Association of State and Territorial Health Officials. She will be aiding Missouri with public health emergency preparedness planning and response programs through 2021, said Lisa Cox, a spokeswoman for the Department of Health and Senior Services.
Missouri was one of 12 states selected to participate based on factors like disability prevalence and the COVID-19 burden in the state, Cox said.
According to the CDC, adults with disabilities are three times more likely than adults without disabilities to have underlying conditions, which can put them at higher risk for developing severe illnesses if they contract COVID-19. Studies have found that adults with intellectual and developmental disabilities are at least two to three times as likely to die if they contract COVID-19.
With no national count of COVID cases in group homes, experts have raised concerns that a lack of data is leaving them with an incomplete picture of the virus’ impact on people with intellectual and developmental disabilities.
An Associated Press survey of every state back in June found that at least 5,800 residents in facilities caring for people with intellectual and developmental disabilities had contracted COVID-19 at the time, and more than 680 had died. The actual figure is almost certainly higher, the AP reported.
While Missouri’s own 106-page vaccine distribution plan notes that Immediate Care Facilities for people with intellectual disabilities fall under long-term care facilitates to be prioritized, it doesn’t delve into specific strategies on how to reach Missourians with disabilities.
However, the state has prioritized people with intellectual disabilities and developmental disabilities, such as Down syndrome, in its list of underlying conditions that are currently eligible to receive a COVID vaccine in Missouri.
The CDC added Down syndrome to its list of conditions at increased risk of severe illness in late December. Randall Williams, director of DHSS, said he felt it was necessary to broaden that category to include all intellectual and developmental disabilities.
“We pretty much followed CDC guidelines, but based on an appeal from the mental health community… I expanded it to all people with developmental disabilities,” Williams told lawmakers during a committee hearing earlier this month. “So that’s one of the few changes I made in their recommendation.”
Weir said she was able to weigh in on that decision and the importance of including that population.
Each week Weir co-chairs Missouri’s Advisory Committee on Equitable COVID-19 Vaccine Distribution meetings, where she’s facilitated discussions around vaccine access since mid-January and worked to expand the committee’s membership.
“She is holding the reins of moving us forward in supporting your decision-making processes as you’re making recommendations to the leadership here at DHSS,” Adam Crumbliss, the director of DHSS’ Division of Community and Public Health, told advisory committee members during a meeting last month.
Access to the COVID vaccine for Missourians with disabilities spans a range of issues, Weir said, including ensuring information is ADA accessible, considering transportation barriers to access appointments and bringing the vaccine to homebound residents and their caregivers.
Weir said the state is working on developing a plain language guide to accessing the vaccine for people with disabilities. A working group of the advisory committee is also focused on tackling transportation issues, and Weir said overall she hopes to use her skills in pulling together public and private resources.
Some St. Louis-area group homes that serve adults with intellectual disabilities struggled to get access to the vaccine early in the state’s rollout, according to the St. Louis Post-Dispatch. The issues predate Weir’s role, but she said the state continues to work through the challenges of limited supply, and as that supply increases will get doses to communities that need it most.
“As somebody who’s ran a national disability rights organization, but also from a caregiver perspective — my personal experience in supporting Kasey and her health and her family — I feel just very fortunate that I’ve been able to step into a role where I can have a significant impact and make sure that people with disabilities are represented,” Weir said.
Weir said she hopes to carry out Kittell’s legacy through her work. She’ll miss the big moments, like when she and Kittell took a trip to Disney World to celebrate her graduation from Westminster College and Kittell’s from Shawnee Mission West High School.
But she’ll especially crave the everyday memories they shared, like spending a weekend afternoon catching a movie or going to a Kansas City Royals game together.
“For her as an individual, she was so much more than her diagnosis,” Weir said. “And she had a sense of humor that would just light up a room.”