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 vaccination 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 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 included 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 in line 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.
Now, as people with disabilities and their advocates try to parse what their states have decided, they say they are experiencing an unwanted deja vu. Throughout the pandemic, they have felt repeatedly sidelined by federal policymakers and state health departments.
Germán Parodi, a co-director of an organization focused on natural disaster response, hosts a daily phone call for people with disabilities and the agencies that support them. Parodi, who is quadriplegic, has listened as a vulnerable population has been made more vulnerable with each new challenge: disability care workers passed over for protective equipment, testing sites inaccessible to wheelchairs, funding cuts to in-home-care programs, and now, trouble getting vaccinated.
“For our marginalized community, it feels like fighting against Goliath,” Parodi said.
The most recent blow in that battle: Despite months of desperate pleas, Congress did not include additional funding for community-based disability services across the country. And adults with disabilities who qualify as dependents on their parents’ taxes will not receive stimulus checks.
“When we are left out of relief packages like this, Congress is telling us they don’t care whether we live or die,” said Julia Bascom, executive director of the Autistic Self Advocacy Network.
Bascom and other advocates have been stymied even in their efforts to get the federal government simply to count the number of covid-19 outbreaks in facilities for disabled people in the same way they are counted in nursing homes.
Researchers such as Scott Landes of Syracuse University have tried to fill the void, studying what little state-level data is available to learn how covid-19 is affecting the disabled community. Landes knew before he looked at a single number that the circumstances were stacked against those with disabilities: an abundance of preexisting conditions. Communal living. Close contact with caregivers who are so low-paid they must work multiple jobs.
But the results were even worse than he expected, with data showing people with intellectual and developmental disabilities are at least two or three times as likely to die if they contract the virus and even more at risk if they receive intensive nursing care. He hoped those numbers would be enough to push the government to track outbreaks in institutions and group homes. Lawmakers including Sen. Elizabeth Warren (D-Mass.) pushed, too. But nothing changed.
“To me, it’s unconscionable. We know this is a vulnerable health population. We can show they’re not doing well. I just cannot fathom why states are being allowed to not report,” Landes said. If states had a greater focus on the pandemic’s impact on the disabled, he said, “vaccination prioritization would be much clearer. You would have the evidence to tell you what needs to be done.”
Advocates calling governors and legislators trying to get clarity on vaccination rollout plans are also asking about direct-service professionals, the caregivers like Lincicome. The majority of “DSPs,” as they’re known in the disabled community, are women of color, and many are immigrant women.
As the Justice Department has pushed to close large institutions for disabled people and instead encourage them to live in group homes or in their own homes within communities, these caregivers have become more and more essential.
They bathe and clothe their clients, administer medication and manage feeding tubes, lift in and out of wheelchairs, and monitor oxygen levels and vital signs. But unlike health-care workers with higher levels of certifications, they are typically paid close to minimum wage. Lincicome, 48, works 18 or more hours to earn $142 per day. Many caregivers depend on multiple jobs in multiple group homes to survive, increasing the coronavirus risk for themselves and those for whom they care.
But most state plans do not say whether the caregivers are counted as health-care workers or at what stage they will be vaccinated. Donna Martin of the nonprofit ANCOR has been trying since November to decipher what each state’s plan means. As of Jan. 8, she could confirm only that 15 states had some kind of plan for caregivers to be vaccinated.
“There is a large sector [of the disabled community] that depends on DSPs for 24 hours a day support,” Martin said. “That is as essential to them as someone who shows up in the ER and needs a nurse or doctor in that moment.”
Until Lincicome and Meek get their shots, she said, they’ll continue to live the way they have for nine months. Because she’s trying to limit the number of people to whom he’s exposed, she rarely gets a break, sometimes sleeping just three hours per night. Three air purifiers she bought for their living room and bedrooms hum alongside the David Bowie Pandora station he likes to play. She does not go to the grocery store, the pharmacy or anywhere else she might have even a small chance of becoming infected. She doesn’t see her own family members.
They stay inside and read about hospitalization rates rising. Meek, she said, definitely understands what the pandemic is all about. She knows because sometimes when she talks about it, he begins to make a deep, loud noise that is his version of a scream.
“How much more can we retreat?” she asks the advocates and doctors from whom she has tried to get answers about vaccination. “We feel like prisoners in our own home.”
Last week, she attended a webinar with the North Carolina Council on Developmental Disabilities. She prepared to ask her question once again. But before she typed, she could see there were dozens of other people on the call, all seeking the same answers.