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By Rose Hoban

Linda Guzman has been lying awake nights, worried about her son JJ, a young man in his twenties who has autism.

“It could be catastrophic for JJ if he contracted the virus with all his other health issues,” Guzman wrote in an email to John Nash, head of The Arc of North Carolina, an organization that provides services and advocacy for people with intellectual and developmental disabilities.

“I have done my best to protect him, but the stress and anxiety of doing so have been overwhelming at times,” the Chapel Hill mother wrote. She gave Nash permission to share her email with NC Health News.

Nash received the email around 5 p.m. on Tuesday, after Mandy Cohen, the secretary of the state Department of Health and Human Services, announced that people with intellectual and developmental disabilities would be given higher priority for receiving COVID vaccines. With the addition of the new Johnson & Johnson one-shot vaccine to the arsenal of weapons to fight COVID-19 this week, North Carolina is opening up vaccination opportunities to more people.

Nash and other advocates for people with disabilities have been pressing for this policy change for weeks.

“For me, this is such a relief,” Nash said. “I spent the last several months now, since December, really trying to put this together trying to get enough momentum to be able to be heard.”

Now, after sitting down with DHHS officials and laying out the case, the advocacy has paid off.

“As a historically marginalized population, the I/DD community has long struggled for recognition, understanding, and support, and we greatly appreciate this step to bring us closer to parity with our fellow North Carolinians,” Nash wrote in a statement sent to people on The Arc’s contact list.

‘An important priority group’

At a press conference on Tuesday afternoon, Cohen said that so-called Group 1 vaccine recipients will be expanded from just including health care personnel and residents of nursing homes to include those who have been receiving home and community-based services for more than 30 days. This sweeps in people who have disabilities who receive their care at home.

“This includes home and community-based services for persons with intellectual and developmental disability, private duty nursing, personal care services, home health and hospice,” Cohen said.

But many people with disabilities don’t get formal services, and there are at least 12,000 people with intellectual and developmental disabilities in North Carolina who are languishing on a years-long waiting list for Medicaid-funded services. Instead, those people often receive care from family members, friends and people paid privately to take the burden of care off of aging parents and siblings.

“In addition for group four, we’ve clarified that higher risk medical conditions include intellectual and developmental disabilities such as Down syndrome and neurological conditions such as dementia,” Cohen said on Thursday.

“This is an important priority group,” said Julia Adams, who lobbies on behalf of people with disabilities at the General Assembly.  “Many individuals with disabilities are living at home, are being cared for by either paid or unpaid caregivers.”

While some of those caregivers, in particular older parents of some people with disabilities, have already received vaccines, Adams said, there are still significant gaps that leave people with disabilities at risk.

“You’re only maybe vaccinating one other person in that house, you still may have kids in that house, you may have neighbors in that house who are coming in who have not been in a vaccination priority pool yet,” she said.

More exposure, more risk

It’s hard to know just how many people will benefit from this policy change, just as it’s hard to know how many people with disabilities have died from COVID in the past year.

North Carolina does not include disability status in its data collection about people who are getting vaccinations and there’s little data about people with disabilities who have been among the more than 11,288 North Carolinians who have died from the coronavirus. That’s in contrast to some other states, such as California, which have been collecting information on disability status, along with data such as age, gender, race, ethnicity and some pre-existing conditions.

But Nash said that the science has become clear that people with disabilities, particularly those with intellectual and developmental disabilities, are at increased risk of contracting and dying of COVID-19.

“Every couple of days, somebody comes out with some study that says people with (intellectual and developmental disabilities) are at greater risk,” said Jennifer Mahan, director of public policy with the Autism Society of North Carolina. “Yes, they’re a greater risk because many of them live in some kind of group setting for different kinds of group settings, but some kind of group setting. But they’re also more at risk because they have underlying physical and genetic conditions, some of which we don’t even know about.”

She also said that many of these people are simply exposed to more workers, more family members, more caregivers – more people – because of their conditions.

“It would be the same if you had any other condition that requires somebody to come in your home and take care of you, or provide some kind of support for you to be able to live,” Mahan said.

According to an analysis done last fall by researchers from the Johns Hopkins University School of Medicine and a private consulting firm, people with disabilities were found to be about three times more likely to die from COVID-19 if they were developmentally or intellectually disabled than people without comorbidities. Those were even higher odds for death than for people with Alzheimer’s disease, cancer or kidney disease. Those people with mobility impairments were even more likely to die from COVID than people with heart failure, spinal cord injury or liver disease.

Nash said his agency provides a lot of guardianship services for people with disabilities and those guardians have seen too many deaths from COVID.

“When somebody passes, we do a pretty healthy review of what went on to make sure that everything handled was handled the way it was supposed to and that there weren’t things that shouldn’t have happened,” Nash said. “And just in the last two months, we’ve done probably a dozen COVID deaths.

“Those are so hard because the staff that works with that individual, they get close to the person,” he said. Nash noted that one of his staff members had two guardians die within a two-week period. “It’s just devastating.”

COVID-19 patients across all age groups had greater odds of dying if they had any of the 15 comorbidities shown for the patients studied from April – August, 2020. Data were adjusted for age and gender. Data, graph courtesy: Risk Factors for COVID-19 Mortality among Privately Insured Patients, A FAIR Health White Paper in Collaboration with the West Health Institute and Marty Makary, MD, MPH, from Johns Hopkins University School of Medicine, Nov. 2020.

A recent analysis from the Kaiser Family Foundation notes North Carolina is among the states that does not separately list deaths from COVID among people with disabilities. Before Tuesday, the state’s vaccination plan did not specifically prioritize these people, other than noting higher priority for people with “high-risk medical conditions.”

The KFF analysis notes that the high-risk medical conditions group does not always put nonelderly people with disabilities who receive direct care services on an equal footing with people who live in nursing homes or other congregate settings.

“As of early February there had been 111,000 cases and 6,500 deaths from COVID-19 across 31 states that report data in settings such as group homes, personal care homes, adult day care programs, as well as in institutional settings such as intermediate care facilities and psychiatric institutions,” reads a press release from KFF about their data analysis.

The analysis also notes that few state vaccination plans have specifically mentioned direct care workers who provide long-term services in settings other than nursing homes, such as homes and in group homes, according to a different data set compiled by researchers from Johns Hopkins University. Until now, North Carolina has not explicitly mentioned people with disabilities who live in home- and community-based settings in the vaccination plan.

“Statewide, the number of people who are now eligible has grown exponentially,” Guzman wrote to Nash. “I am thinking there are thousands of families right now, crying tears of joy as I am.”

Guzman’s son is scheduled to receive a vaccine on Thursday, March 4.

Rose Hoban

Rose Hoban is the founder and editor of NC Health News, as well as being the state government reporter. Hoban has been a registered nurse since 1992, but transitioned to journalism after earning degrees...