There was a “terrible spell” beginning last October, when 22 individuals with disabilities fell ill in group homes or other programs operated by Development Services of Dickson County.
Katie Powers, associate executive director of the nonprofit organization, said she watched helplessly as one in every five individuals aided by her agency got sick with COVID, along with 55 staff members. Despite strict precautions including mask-wearing, handwashing and limited outside interactions, the virus still crept into group homes where staff provide 24-7 care and private residences where, typically, aging parents require a few hours a day of support for adult children with disabilities.
Then came a flicker of good news: the day before Christmas Eve, Powers got word that state officials would head to their Dickson offices the next day, providing vaccines to anyone able to make it in. It marked a hopeful turning point for a virus that has hit people with disabilities at disproportionately high rates. Since then, 70 individuals with disabilities and 75 staff have been vaccinated at the agency.
“It’s going to open the world back up for us,” Powers said. “They’ve been in their home for months. They’re looking at going back to church, to work, seeing friends and family. It’s a huge relief after an awful time.”
Tennessee was the first state to prioritize vaccinations among people with intellectual and developmental disabilities in the very first phase of vaccine distributions. On December 21, five days after hospitals began giving out the first vaccines to healthcare workers, the Department of Intellectual and Developmental Disabilities, or DIDD, held their first mass vaccination event for people enrolled in state programs.
Brad Turner, commissioner of DIDD, said he “aggressively advocated” for individuals with intellectual and developmental disabilities — which include autism, Down syndrome and cerebral palsy— to be included in the very first round of vaccine distribution. As spring turned to summer, Turner — who has a 14-year-old daughter with developmental disabilities — said he had grown alarmed.
The fatality rate among people with intellectual and developmental disabilities in Tennessee was three-and-a-half times as high as other Tennesseans — a rate comparable only to nursing homes. DIDD programs serve a total of about 12,500 people with disabilities. At least 57 have died and 1,503 tested positive for the virus.
Since December, DIDD has rolled out a series of vaccine event for people in its programs, setting up vaccine pop up sites at now-shuttered institutions that once housed people with disabilities, organizing strike teams to visit sites such as the Dickson County agency and connecting individuals with local health departments. The department also widely distributed a plain language explainer for individuals with disabilities.
Tennessee’s early rollout of early vaccines for adults with intellectual and developmental disabilities has not been without some bumps, particularly for individuals with disabilities who have not — or cannot be — enrolled in limited state services available to them. They include those on a waiting list for state-subsidized care that now stands at 4,929.
Traci Foster’s 19-year-old, Dylan, is among them. Dylan, who is deaf, nonverbal and has autism, is on the waiting list for Employment and Community First CHOICES, a state program operated by TennCare and DIDD that provides services to enable people with disabilities to live as independently as possible.
Like many individuals with intellectual disabilities, Dylan also has chronic disease: in his case chronic obstructive pulmonary disease.
Under the state’s vaccination plan, any Tennessean 18 or older who cannot live independently due to illness or disability, qualified for a vaccine in December. DIDD directed families that contacted them to register for DIDD vaccination events and engaged advocates and other families to help spread the word to people who were eligible, Cara Kumari, a spokeswoman said.
“Our experience was that if you are not in one of those (state) programs, it’s frustrating to figure all this out,” Foster said. “I spent days calling everyone I could think of to figure out where to get him vaccinated.”
Still, Foster and her husband eventually navigated the vaccination system to get their son a vaccine back in December, an accomplishment Foster attributes to her experience with complex bureaucracies as a staff member at the Tennessee Disability Coalition.
Carly Carlton, a spokeswoman for DIDD, said agency officials want to ensure that anyone with intellectual disabilities who wishes to get a vaccine is given the opportunity. DIDD has set up an email inbox for questions: [email protected] to help find vaccine locations and events, she said. DIDD staff also work closely with community groups to ensure information about vaccines is reaching those who are not enrolled in state services,” Carlton said.
Kara Adams, director of the nonprofit Family Voices of Tennessee, had also been frustrated by a lack of information from state officials about vaccine availability.
Adams’ 17-year-old son, Kael, also has a complex and chronic heart illness that makes him vulnerable to viruses. Adams, whose nonprofit organization advocates for families of children with disabilities and illnesses, said she was particularly plugged in to state vaccine developments affecting children with disabilities — but even she had trouble getting timely information.
It was from a Facebook page that Adams learned that the state had retroactively added 16 and 17 year olds who are “medically fragile” (as her son is) to †he list of individuals eligible for the first round of vaccines.
State officials made the change on February 16, without a public announcement. Adams learned of it a week later.
“There was no announcement, no nothing,’ Adams said.
When Adams logged onto the state’s online portal to make an appointment for her son, her entry was rejected on the basis her son was under 18, she said. When Adams called the Nashville health department to make the appointment, “no one knew what I was talking about.”
Adams eventually got her son an appointment, but said she remains concerned that other families may not be aware of their eligibility for vaccines based on illness or disability.
“If you’re seeing your child now falls into the very first category, several months after vaccines were being given out and you can’t get a vaccine, that’s frustrating,” she said.
For those with disabilities who have gotten the vaccine, after a year of no work, church, day programs or visits with family the vaccine is a chance to resume activities long put on hold.
“I took the shot and I’m proud,” said Scott Finney, who, at 55 years old, has worked for more than 30 years as a “self-advocate” for himself and others with intellectual disabilities at The Arc Tennessee.
Finney got the vaccine in the lobby of his apartment building, which provides assisted living and independent living units. The pandemic, he said, slowed his plans to move into his own home, just behind his sister’s house in east Nashville. Finney gets his second dose on March 11 and he hopes to move soon afterwards. He is one of 5,000 individuals in DIDD programs who have gotten at least one dose of the vaccine thus far.