In mid-May Gov. Bill Lee announced that Tennesseans with intellectual and developmental disabilities served by state programs would receive universal COVID-19 testing.
The results so far? In six group homes, multiple people have tested positive. Three intermediate care facilities — which typically house individuals with severe or profound disabilities who are also medically fragile — have also experienced outbreaks.
As of June 4, a total of 2088 of the 12,000 people with intellectual or developmental disabilities served by the Department of Intellectual or Developmental Disabilities (DIDD) have been tested for the virus, according to an agency spokeswoman.
Fifty are now positive for COVID-19.
The testing plan has been hampered, in part, by resistance from individuals and their families, said Cara Kumari, a DIDD spokeswoman.
“We do need to obtain consent from the person (if legally competent) or the conservator before administering a test,” Kumari said. “Obtaining consent has been a barrier mainly since some people are afraid of a test.”
Individuals with intellectual disabilities, defined as possessing an IQ of less than 70, and those with developmental disabilities — Down Syndrome or cerebral palsy, for example — are served by state programs intended to help adults live as independently as possible.
While some remain at home with parents as caregivers, others live in group homes with other men and women possessing similar abilities. The most physically and mentally fragile individuals live in intermediate care facilities with round-the-clock care.
In Dickson County, where Dickson County Disability Services provides aid to 99 individuals, most living in group homes, “many families” have resisted testing, said Katie Powers, associate director.
“Many chose not to because they weren’t having symptoms,” Powers said. “I think for some families it’s scary.”
In response, the state began offering an alternative COVID-19 test that is less invasive than the nasal swab, known as a “neopharyngeal” test, Kumari said. The anterior nares test uses a swab in the front of the nose rather than deep into the nasal cavity.
“This has helped tremendously,” Kumari said.
The state requires agencies it contracts with to provide care to people with disabilities to report all positive tests of staff or individuals served in no more than four hours after receiving results. The department tracks contacts with housemates and staff who have worked in the home, she said. Private agencies who care for individuals are expected to follow quarantine protocols.
“Most people reside in homes of four or less, with a few still in larger homes,” Kumari said. “This has allowed us to minimize the spread in our population thus far.”
Powers said the pandemic has forced individuals with disabilities into a form of extreme, protective isolation, kept from walks, outings to grocery stores and restaurants.
“It’s affecting people emotionally more than physically right now,” Powers said. “They used to have to be out for six hours a day, and all of a sudden they’re home. Some of them love it because they don’t have to be up at a certain time. They can watch TV all day. But for other people, you can tell, in the last couple of weeks they’ve become antsy.”
In the past two weeks Powers said they have taken individuals out in small groups, but are avoiding all public places.
“So they’ve been just riding around because we’re still scared. I’m not going to say we aren’t scared still.”
Powers’ agency, and 200 staff, provide round-the-clock care to most of the 99 people living in group homes as well as a few who remain at home with family.
The agency is struggling financially because of a quirk in rules regarding state funding. Since many of their clients are now confined to their homes, the state is reimbursing them for a lower “homebound rate” to pay their staff to provide the meals, bathing, and other care required instead of the higher rate provided to take individuals out to restaurants, stores, movies or other outings.