By The Washington Post
For weeks, Wendy Lincicome has been asking the same question. She asks it on the phone. She asks it in emails to state officials. She cares for an epileptic blind man with cerebral palsy 24 hours a day, and when he is asleep, she types her question into Google.
“When will people with disabilities get the coronavirus vaccine?” Tens of thousands of Americans with intellectual and developmental disabilities — who are two to three times as likely to die of covid-19 — are waiting for an answer.
The Centers for Disease Control and Prevention has said health-care personnel and residents of long-term-care facilities should be first in line, in phase “1a.” Disability advocates say guidance should be interpreted to include all people with disabilities who receive long-term care, whether in large institutions, smaller group homes or in settings like Lincicome’s, who is paid to live with a North Carolina man who has round-the-clock needs.
But as guidance from the federal government has been translated into vaccine distribution plans made by states, those with disabilities have been downgraded to lower priority status.
D.C. as well as Maryland, Alabama and many other states are leaving people with disabilities who live in large institutions and group homes out of their Phase 1a plans, instead moving them to 1b or 1c. In Indiana and Rhode Island, group homes have been pushed to Phase 2, with the likelihood that vaccinations are months away.
Most states make no mention of disabilities in their vaccine plans, leaving people like Lincicome panicking and confused about how long they and those for whom they care will have to wait.
She is terrified that the man who relies on her, 33-year-old Sloan Meek, could end up as another case of a disabled person being allegedly discriminated against in a hospital after falling ill with covid-19. Without her help, or the help of a computer, Meek is extremely limited in what he can communicate to medical professionals.
“They don’t look at Sloan and see what I see,” Lincicome said. “They don’t see the guy who just recorded an album or has an annual Christmas carol concert. They see a wheelchair, and somebody who is laying in their bed all day.”
By North Carolina guidelines, Meek may not qualify for the vaccine until Phase 2, because he doesn’t live in a home with other individuals with disabilities. If Meek lived in Tennessee, according to its state plan, he’d be a part of the very first wave of vaccinations because of the level of care he receives. Though some state plans would count Lincicome — a caregiver known as a “direct support professional” — as a health-care provider to be provided for in Phase 1a, most have no public plans for caregivers in her role.
The lack of consistency is the result of a lack of guidance from the CDC. Other than acknowledging those with Down syndrome should be prioritized along with people with high-risk medical conditions, federal recommendations for vaccine rollout make no explicit mention of any other disabilities.
A CDC spokesman said states could request that intermediate-care facilities, the large, often government-run institutions for the disabled, receive vaccinations through the same pharmacy partnership program as nursing homes. Decades of reform efforts have closed many of those institutions, moving people with disabilities into small group homes or other living situations integrated into their communities.
But despite an estimated 70,000 people living in group homes, the CDC recommendations do not include them, leaving states to decide where inline those residents, and their caregivers, should fall.
On Tuesday, the Trump administration complicated those choices even more by instructing states to begin vaccinating people with high-risk medical conditions and adults 65 and older.