People with disabilities moved to the vaccine list

Families and advocates applaud the decision to increase the priority of vaccines for people with disabilities.

By Rose Hoban

Linda Guzman stayed awake at night worried about her son JJ, a young man in his twenties with autism.

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

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

Nash received the email around 5 p.m. Tuesday, after Mandy Cohen, secretary of the State Department of Health and Human Services, announced that people with intellectual and developmental disabilities would be given a higher priority. high to receive COVID vaccines. With the addition of Johnson & Johnson’s new single-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 disability advocates have been pushing for this policy change for weeks.

“For me, it’s such a relief,” Nash said. “I’ve spent the last few months now, since December, really trying to put this in place, trying to get enough momentum that I can be heard.”

Now, after meeting with DHHS officials and exposing 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 move closer to parity with our compatriots in North Carolina,” wrote Nash in a statement sent to people. on the Arc contact list.

“An important priority group”

At a press conference on Tuesday afternoon, Cohen said so-called Group 1 vaccine recipients will be expanded from healthcare workers and residents of nursing homes to those who have been receiving home and community services for more than 30 days. . This affects people with disabilities who receive their care at home.

“This includes home and community services for people with developmental and developmental disabilities, private nursing, personal care services, home care and palliative care,” 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 languishing on a multi-year wait list for Medicaid-funded services. Instead, these individuals often receive care from family members, friends, and privately paid individuals to ease the burden of caring for aging parents and siblings.

“In addition to group four, we have clarified that high risk medical conditions include intellectual and developmental disabilities such as Down syndrome and neurological conditions such as dementia,” Cohen said Thursday.

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

Although some of these caregivers, especially the older parents of some people with disabilities, have already received vaccines, Adams said, there are still significant gaps that put people with disabilities at risk.

“You might only be vaccinating another person in this house, you might still have children in this house, you may have neighbors in this house coming in who haven’t been part of a yet. priority vaccination pool, ”she said.

More exposure, more risk

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

North Carolina does not include disability status in its collection of data on who gets vaccinated, and there is little data on people with disabilities who were among the more than 11,288 North Carolina residents who have died. of the coronavirus. This contrasts with some other states, such as California, which have collected information on disability status, as well as data such as age, gender, race, ethnicity, and some pre-existing conditions.

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

“Every other day someone publishes a study that says people with (intellectual and developmental disabilities) are at higher risk,” said Jennifer Mahan, director of public policy at the Autism Society of North Carolina. “Yes, they’re a greater risk because a lot of them live in a kind of group setting for different kinds of group setting, but kind of a group setting. But they’re also at higher 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 another condition that requires someone to come to your home and take care of you, or provide you with some kind of support so that you can live,” Mahan said.

According to an analysis carried out last fall by researchers from Johns Hopkins University School of Medicine and a private consulting firm, people with disabilities were about three times more likely to die from COVID-19 if they had an intellectual or developmental disability than people without comorbidities. These risks of death were even higher than for people with Alzheimer’s disease, cancer or kidney disease. People with reduced mobility were even more likely to die from COVID than people with heart failure, spinal cord injury or liver disease.

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

“When someone comes by, we do a pretty healthy review of what happened to make sure everything was handled the way it was meant to be and that there weren’t any things that weren’t going to go wrong. had to happen, ”Nash said. “And just in the past two months, we’ve probably had a dozen deaths from COVID.

“It’s so difficult because the staff who work with that person, they come close to the person,” he said. Nash noted that one of his staff killed two guardians within two weeks. “It’s just devastating.”

Risk Factors for COVID-19 Mortality in Privately Insured Patients, A FAIR Health White Paper in Collaboration with the West Health Institute and Marty Makary, MD, MPH, Johns Hopkins University School of Medicine, November 2020.

“data-medium-file =”×300.png “data-large-file =” /wp-content/uploads/2021/03/RiskForDisabilities-421×450.png “class =” size-full wp-image-33012 sp-no-webp “>Risk Factors for COVID-19 Mortality in Personally Insured Patients, A FAIR Health White Paper in Collaboration with the West Health Institute and Marty Makary, MD, MPH, Johns Hopkins University School of Medicine, November 2020. “data-medium-file =”×300.png “data-large-file =” https: //www.northcarolinahealthnews .org / wp-content / uploads /2021/03/RiskForDisabilities-421×450.png “loading =” lazy “class =” size-full wp-image-33012 sp-no-webp “alt =” the bar graph shows a high risk of death from COVID for people with disabilities. “height =” 1180 “width =” 1104 “srcset =” .png 1104w, https: // 1lbxcx1bcuig1rfxaq3rd6w9×300.png 280w, https://1lbxcx1bcwweng1rfx9dnaq-contentweng1rfxaq-content6w u ploads / 2021/03 / RiskForDisabilities-421×450 .png 421w,, wpengine.netdna / wpload-sslcontent /2021/03/RiskForDisabilities-768×821.png 768w “sizes =” (max-width: 1104px) 100vw, 1104px “>

COVID-19 patients of all age groups were more likely to die if they had any of the 15 co-morbidities shown for patients studied from April to August 2020. Data was adjusted for l age and gender. Data, graph courtesy: Risk Factors for COVID-19 Mortality in Privately Insured Patients, A FAIR Health White Paper in Collaboration with the West Health Institute and Marty Makary, MD, MPH, Johns Hopkins University School of Medicine, November 2020.

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

KFF’s analysis notes that the high-risk medical conditions group does not always put non-elderly people with disabilities who receive direct care services on an equal footing with people who live in nursing homes or nursing homes. ‘other gathering places.

“By early February, there had been 111,000 cases and 6,500 deaths from COVID-19 in 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 ”, we read a press release from KFF on their data analysis.

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

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

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

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