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Disability rights advocates question Kentucky’s policy on COVID vaccines

Disability rights advocates question Kentucky’s policy on COVID vaccines

 


Nathan French has applied for COVID-19 vaccination and is waiting for an appointment. A 22-year-old senior at Transylvania University has COVID-19 twice.

“It was asymptomatic for the first time, and I was grateful,” said French. “But the second time I suffered from lung problems and felt my heart rate was faster than usual. I was afraid of my safety because I didn’t know what would happen to me.”

French people have a developmental disorder that is a type of neuromuscular disease called Charcot-Marie-Tooth disease that affects the diaphragm and nerves. French people also have heart disease.

The second coronavirus infection caused the French to feel unable to breathe and was admitted to the hospital for the day he said he did not feel that treatment was a priority.

“They were more interested in dealing with people without disabilities, so I felt they were being ignored and not important as a person,” said the French.

Kentucky college student Nathan French is uncertain about the status of the vaccine in Kentucky.

The French said he wasn’t sure if he was currently vaccinated in Kentucky, but hopes to get it soon. Despite complaints from disability advocates and studies showing that people with intellectual and developmental disabilities are at increased risk of dying from COVID-19, Kentucky’s plans to prioritize vaccination are in its infancy. The failure was not explicitly included.

The French have developmental disabilities, so if you live in other nearby states that prioritize people with disabilities, such as Ohio and West Virginia, he is already eligible for vaccination.

The Kentucky immunization program prioritizes conditions that the US Centers for Disease Control and Prevention considers to be “high risk” for severe COVID-19. Down’s syndrome is listed as a Phase 1C eligibility condition for vaccination. This is a broad category recently launched in the state, but according to disability advocates, this is the only such disability on the state list.

At a press conference on March 16, Kentucky Governor Andy Beshear answered a question from the Ohio Valley resource, stating that the federal immunization program strictly follows the CDC guidelines.

“The reason it’s not included in Kentucky is because it’s not included in the CDC’s prioritization, but that said, it needs to be considered,” said Bescher.

Asked again on March 18th, Bescher did not yet have a definitive answer.

“There was even an internal disagreement as to whether these individuals were in 1C,” Bescher said. “They certainly need to be prioritized and will be clarified shortly.”

“Yes, people with intellectual and developmental disabilities are in 1C,” Crystal Staley, communications director of the Governor’s Office, said in an email later that night.

But by the end of the week, even advocates who were closely tracking the issue remained uncertain about what state policy was for people with intellectual and developmental disabilities, or IDDs. ..

“People with IDDs and their families don’t know they’re actually in 1C,” Kentucky Conservation and Advocacy Legal Director Heidi Sisler said in an email. “Especially now that supply is increasing significantly, we need to clarify that and we need to update our website to clarify it.”

Push to change

Estimated in 2017 101,535 In Kentucky, people with intellectual and developmental disabilities were serviced. Kentucky Conservation and Advocacy Is a federal-mandated, independent state agency that works to protect the rights of persons with disabilities.

The group sent a letter to Governor Bescher in December requesting vaccination priorities for IDD patients. Legal Director Sisler said he had addressed some concerns. For example, people with disabilities living in apartments were prioritized in the state’s first vaccine phase, with a focus on long-term care centers. In early February, the agency met with the Cabinet for Health and Family Services via Zoom.

“They said, you know,’We’re still listening. We’ll be back with you,” Sisler said. Since then, the agency has sent another letter, New England Journal of Medicine It found that people with intellectual and developmental disabilities were more likely to be infected and were almost six times more likely to die of COVID-19 than the general population.

People waiting at Krogerfield’s UK Healthcare Vaccination Site after being vaccinated.

Sisler said he thought the data would get the state’s attention.

“I thought (research) was really a game changer, which would awaken the Kentucky authorities and the CDC,” she said.

“Catastrophic effects”

On March 5, the New England Journal of Medicine released a commentary with a candid warning about the “catastrophic impact” COVID-19 had on people with IDD. The study found that people with intellectual disabilities were “significantly at increased risk of dying from Covid-19.”

One of the authors of the study, Dr. Wendy Ross, is a developmental and behavioral pediatrician who directs the Center for Autism and Neurodiversity in Jefferson Health, Philadelphia. Since the publication of the study, she said that about six states have changed their vaccine plans to include intellectual disabilities.

“A major distinguishing factor in this study was that we didn’t say that intellectual disability was one of many factors that could increase the chances of getting infected with COVID and dying from COVID,” Ross said. Says. “I said it was literally the greatest independent risk factor for getting COVID, and secondly, I just get older to die with COVID.”

The CDC immunization guidelines for people with disabilities state that “disability alone does not increase the risk of getting COVID-19.” The agency regularly updates the list of medical conditions, but does not add intellectual or developmental disabilities.

Ross said the data from the study was presented to the CDC.

“They didn’t question the quality of our data, but they didn’t change the recommendations, and I can’t honestly explain it,” she said.

Challenges elsewhere

Ohio listed intellectual and developmental disabilities in Phase 1B of its vaccine program, which is scheduled to be distributed on January 25. For people with certain medical conditions, the county’s Developmental Disability Commission will help adjust the vaccine.IDD people who do not use county committee services should contact them board Plan to get their vaccine.

“Ohio’s decision to vaccinate people with developmental or intellectual disabilities and certain medical conditions is in line with Ohio’s goal of saving lives when these individuals become infected with COVID-19. It was based on the serious consequences it could face, “health said in an email.

Schortz added that the local health department is immunizing people who cannot leave the house.

The West Virginia Vaccine Program lists Phase 2-A intellectual and developmental disabilities and caregivers. The state expanded its eligibility in Phase 2A on March 15.

Ann McDaniel, Secretary-General of the West Virginia Independent Living Council, said advocates and groups of people with disabilities are pushing for higher priorities for people with disabilities in the state’s plans. Said.

“People with disabilities have been in Phase 2-A for a long time, but have been in Phase 1 just last week or so since the vaccination began,” she said.

McDaniel said it was especially important to focus on people with disabilities who live in a group environment.

“The whole phase structure started with people in nursing homes, people in life support, people in prison,” McDaniel said. “But people with disabilities living in group homes, larger group homes and other apartments were not included.”

McDaniel said the continued promotion of the group for inclusion of persons with disabilities “may have accelerated the transition to Phase 2 a bit.”

Continuing efforts focused on vaccine registration to give people access to the vaccine have led to the establishment of a pop-up clinic to reach people who cannot reach the vaccination site.

McDaniel said a strategy for nurses to vaccinate people at home and in meetinghouses is also underway.

“I think Johnson & Johnson’s new vaccine will really help it,” she said. “There is no time frame between thawing and getting into your arm,” she said.

Still, in West Virginia, the challenge is to identify people who can’t leave their homes or have access to transportation to get to a vaccine clinic.

Maj. Gen. James A. Heuer, Deputy General of West Virginia, said there was more than one way to identify people who couldn’t go to the vaccine clinic. Health departments, community clinics, and programs focused on immunization of persons with disabilities have helped identify approximately 2,400 individuals to date.

However, Heuer said he did not know how many of the 2,400 people were vaccinated at home or in the health sector.

“It’s probably not what we tracked,” Heuer said.

Heuer said college health and science programs and pharmacy programs volunteered to manage shots. “The other group that is really very good is the people in independent pharmacies, because in some of these small rural communities it’s not uncommon for pharmacists to still go home for vaccines. . “

New supporters

Nathan French said he was disappointed when he learned that the IDD people were not listed for vaccination in Kentucky.

“I learned to expect to be disappointed,” he said.

But the French want to change things. He plans to be an advocate for people with disabilities.

“I hope that later in my life, I will be able to represent people with disabilities and participate in politics to make changes on a state and national scale.”

June Leffler, Appalachia Health News Reporter for West Virginia Public Broadcasting, contributed to the story.

Ohio Valley Resources is supported by public broadcasters and partner stations..

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