COVID-19NC: New Priority For People With Disabilities
This week North Carolina health officials announced that people with intellectual and developmental disabilities will be given higher priority for receiving COVID-19 vaccines. North Carolina Health News editor Rose Hoban has been following this story and shared details with BPR’s Helen Chickering during their weekly check-in.
HC: I'd like to start by talking about an article you penned about people with disabilities during the pandemic along with the people who care for them. This week those groups were bumped up on the vaccine priority list and in some cases recategorized. Here's health secretary Dr. Mandy Cohen during the coronavirus task force briefing.
“First for group one, the definition of long-term care has been updated to include people receiving long-term home care for more than 30 days. This includes home and community-based services for persons with intellectual and developmental disabilities, private duty nursing, personal care services, home health, and hospice. In addition, for group four, we've clarified that higher risk medical conditions include into intellectual and developmental disabilities, such as Down syndrome and neurologic conditions such as dementia.
RH: I was hearing a lot from disability advocates about the fact that they were not higher up in the priority list. And according to John Nash with ARC of North Carolina, an organization that provides services and advocacy for people with intellectual and developmental disabilities, there was a lot of behind the scenes advocacy. He talked about bringing data to the state, bringing people from the disability community to state officials to say, look, this is a huge issue for people. And the fact that in the initial rollout, there was no real focus on people who were vulnerable, people with a disability who might be getting, you know, home and community-based services. That means that maybe they've got an aid coming into the house. Maybe they've got relatives who come in, who are unpaid caregivers. And if there's a lot of virus circulating in the community, then there is the risk that they're going to bring it in. So, this was an important priority group, and it's a big step forward to get these folks prioritized. Now, part of the issue is going to be getting some of these folks who are not mobile. You can't put them in a car they're really bound. How do you get those folks vaccinated? And that's, I think one of the next big hurdles.
HC: Also during this week's coronavirus briefing, you brought up a bigger picture question. I want to play some of that audio.
“What do we know about people with disabilities in North Carolina and COVID? In some states like California , have been doing separate counts to get a sense as to what's happening. Have we (NC) been counting cases among people with disabilities? And what do we know about how they've been affected by the pandemic here?
HC: The answer from Dr. Cohen was no, that is not among the demographics collected. You went on to ask more and noted that research that suggests that people, some disabilities are not doing so well.
RH: Terrible. People with developmental disorders have the highest odds of dying from COVID higher than people with lung cancer. I was really surprised to find that out. This was from a study that was conducted by researchers from Johns Hopkins and published last fall. And someone pointed me toward this research this week. And I was like, holy crow – it showed the highest odds ratio of dying from COVID are people with developmental disorders. Number two, lung cancer, number three, intellectual disabilities and related conditions. Number four, spinal bifida and other nervous system anomalies like that's above leukemia and lymphoma, kidney disease, Alzheimer's, colorectal cancer.
HC: I want to follow up on a piece that we've talked about before by reporter Hannah Critchfield that looked at how North Carolina prisons report COVID deaths and it uncovered some that did not make it into the state count. And that article had an impact.
RH: The NC Department of Public Safety has changed its policy based on the reporting that we've done. They're going to not just internally determine whether prisoner died of COVID or not. You know, we were able to see from death certificates that we got from public records requests that a handful of inmates had COVID listed on their death certificates, but they were not officially deaths from COVID in the prison system. It increased the number by three, not a huge amount, but it could point to a more systemic issue. And DPS is now saying that there'll be more outside review of how these people died, not just a decision that's made internal to the department.
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 in public health policy and journalism. She's reported on science, health policy and research in NC since 2005. Contact: editor at northcarolinahealthnews.org