During our most recent Let’s Talk New Mexico show, advocates, long COVID survivors, and health care professionals expressed concern that more people than ever will develop severe and debilitating disabilities. KUNM continued the conversation with Mia Ives-Rublee, director for the Disability Justice Initiative at the Center for American Progress, about the future of our already broken health care system.
MIA IVES-RUBLEE: When the Biden Administration came out and said, long COVID could be counted as a disability, partially because so many of these individuals are truly new to the community, [they] don't understand sort of the unfortunate lack of level of support from health care to being able to get a job or being able to get some safety net program services.
So we have been fighting for disability rights and justice for longer than I have been alive. And so individuals who are just confronting this chronic illness, because that's what it is, don't realize that they have certain rights, they have the ability to go ask for services.
KUNM: You had mentioned the Biden administration's announcement that it could be considered a disability, what does that exactly mean? Are folks now entitled to certain rights?
IVES-RUBLEE: It provides sort of an opening of the door to individuals to be able to say, ‘okay, now I have a name for it’, right? Because that's like, the big part is just like, figuring out where you fit within the communities. Now, I need to look at, "what am I eligible for?"
And so the disability community had been sort of raising the alarm bells at the beginning, very beginning of COVID, understanding how significant illnesses can cause some of these post-symptomatic issues that long COVID individuals are facing. So the disability community was already trying to get the word out. But the problem was, was that a lot of individuals weren't listening.
KUNM: Many people who are living with disabilities due to their COVID infections are living with new identities in society, and maybe identities that society doesn't often think about. How can people seek the resources they need and not compare themselves to other people within the community?
IVES-RUBLEE: One of the biggest challenges that we have within the disability community is convincing America about how many people actually have a disability, right? A lot of society has made it so stigmatizing to say disability.
KUNM: It was surprising reading that long COVID was actually coined by the patient community. What needs to change so patients aren't always having to be their own advocates?
IVES-RUBLEE: In reality taking some of the money out of the healthcare system, and making it a right, rather than something that you have to pay for. Because doctors and nurses are all overworked. Many of them have come down with long COVID themselves that has basically broken down an already broken health system, where individuals aren't often believed, or doctors don't have the time or the resources to actually look into a person's history, do the evaluations and be able to come up with services and supports that will help the individual either get better or manage the disability that they have.
KUNM: And moving forward, what can we do to educate more people about disabilities and the gaps in the many systems that are failing so many people every day?
IVES-RUBLEE: We need to better understand that disability is one of the biggest minority groups in the United States. At least one of four individuals have a disability. And within 2021 to 2020 1.2 million more people became disabled during that time. That's the most that we have seen in all of the years we have been tracking that. So when people say that long COVID is a mass-disabling era, it's 100% true.
Resources:
Patient Led Research Collaborative
UNM Center for Development and Disability
A Tsunami of Disability is Coming as a Result of ‘Long COVID’ - Scientific American
Guidance on “Long COVID” as a Disability Under the ADA Section 504 and Section 1557
To solve the mystery of long COVID, researchers look to an older disease- WBUR
America is Sliding Into the Long Pandemic Defeat - The Atlantic
It’s Not Just Long COVID - The Atlantic
This coverage is made possible by the W.K. Kellogg Foundation and KUNM listeners.
