The soldiers with inexplicable breathing complaints started appearing in Dr. Robert F. Miller’s pulmonology clinic in 2004, the year after Baghdad fell to invading United States forces. These new patients were active-duty troops from nearby Fort Campbell, men and women who came home from war with mysterious respiratory ailments. The base asked Miller, an unassuming and soft-spoken lung specialist at Vanderbilt University, to take a look.
Miller was baffled to see formerly healthy soldiers gasping for air after mild exertion. Some of them had been close to the fire at the Mishraq sulfur mine outside Mosul, thought to be the largest release of sulfur dioxide ever caused by humans. But others had never gone anywhere near the burning mine. Some of them could no longer run or climb stairs, and yet their X-rays and pulmonary-function tests looked normal.
Confounded, Miller decided to try something radical: He began ordering lung biopsies under general anesthesia to look for more subtle damage known as small-airways disease. Sure enough, the tissue revealed toxic lung injury, which Miller diagnosed as constrictive bronchiolitis. To the doctor, this meant two things: First, the soldiers were not exaggerating their symptoms. And more important, noninvasive screenings couldn’t be trusted to detect these new post-deployment ailments.
Eager to share his discovery, Miller contacted doctors at Walter Reed Army Medical Center. This led, at first, to what Miller recalls as an enthusiastic collaboration. Army doctors flew to Tennessee to review Miller’s biopsies, and together they went to Fort Campbell to develop a protocol for evaluating patients.
Ambulances in Kansas speed toward hospitals then suddenly change direction because hospitals are full. Employee shortages in New York City cause delays in trash and subway services and diminish the ranks of firefighters and emergency workers. Airport officials shut down security checkpoints at the biggest terminal in Phoenix and schools across the nation struggle to find teachers for their classrooms.
The current explosion of omicron-fueled coronavirus infections in the U.S. is causing a breakdown in basic functions and services — the latest illustration of how COVID-19 keeps upending life more than two years into the pandemic.
“This really does, I think, remind everyone of when COVID-19 first appeared and there were such major disruptions across every part of our normal life,” said Tom Cotter, director of emergency response and preparedness at the global health nonprofit Project HOPE. “And the unfortunate reality is, there’s no way of predicting what will happen next until we get our vaccination numbers — globally — up.”
The COVID-19 pandemic and the ensuing economic disruption have drawn more attention to longstanding issues related to housing and internet access and how these issues can impact health. As the primary source of health insurance for low-income populations, Medicaid covers a considerable share of people living in homes that are unaffordable, inadequate, or have limited access to the internet. This brief examines housing adequacy, affordability, and internet access within the homes of Medicaid enrollees using data from the 2019 American Community Survey (prior to the COVID-19 pandemic) and assesses the limited role that Medicaid can play in helping to address these challenges. Key findings include the following:
Prior to the pandemic, in 2019, the majority (57%) of Medicaid enrollees lived in a home that was inadequate (defined as lacking complete plumbing or kitchen facilities or being overcrowded) or unaffordable (defined as costing more than 30% of household income), representing more than one-third (36%) of all individuals in such homes nationally.
We estimate that 13% of Medicaid enrollees did not have internet access in their home prior to the pandemic, either through a computer or cell phone, and an additional 13% have internet but with limited computer access in their homes (i.e., a smartphone was the only computer device in the home or no computer device).
The likelihood of Medicaid enrollees living in inadequate or unaffordable homes were especially high for Native Hawaiian/Other Pacific Islander enrollees (70%) and Hispanic enrollees (67%), as well as enrollees ages 18 and under (63%) and enrollees in metro areas (59%). Limited internet and computer access was highest among American Indian/Alaska Native enrollees (43%), enrollees ages 65 and older (41%), and enrollees in non-metro areas (31%).
Housing problems can negatively impact health, but Medicaid plays a narrow role in addressing these impacts. Medicaid has traditionally been able to cover certain non-clinical services (including housing-supports) through home and community-based services (HCBS) programs that support seniors and people with disabilities. Beyond HCBS programs, states have limited ways to leverage Medicaid for supporting access to some housing supports, though Medicaid generally cannot pay the direct costs of non-medical services like rent and food.
While housing insecurity and other “social determinants” can affect health, policies and programs outside of Medicaid – and the health care sector generally – have the greatest impact on housing issues among the broader Medicaid population. Recent legislation has created or extended funding for several federal housing programs, which likely helped to stabilize housing for many people during the pandemic. Additionally. one of the key priorities in the proposed infrastructure bill, the Infrastructure Investment and Jobs Act, would address some issues related to broadband access in rural and low-income communities if signed into law. The Centers for Disease Control and Prevention also implemented a temporary eviction moratorium that likely contributed to greater housing stability for people behind on rent; however, the Supreme Court ended the moratorium in August 2021, requiring that Congress authorize the moratorium to continue.
Accessibility in health care for low vision people has always been an issue, but the pandemic exacerbated inequities.
From social distancing to public transit shut downs, there have been obstacles. The latest is at-home COVID tests. They are hard to come by and for a blind person, even if they get one, it’s impossible for them to complete on their own.
“Every COVID at-home test I know of requires some sort of visual identification of the result,” said Mark Riccobono, the president of the National Federation of the Blind.
Riccobono said people are writing or calling every day, concerned about the accessibility.
Their only option is relying on someone else to help them.
“We don’t want to unknowingly expose friends, family, associates to COVID if you don’t have to,” said Riccobono. “A lot of blind people live independently, which is the goal, they don’t have someone who can see readily available to them.”
The issue of accessible testing is nothing new. The Pennsylvania-based company Accessible Pharmacy started in 2019 as a full service health care company specializing in the medication management needs of the blind and low vision community.
On November 12, 2021, the Centers for Medicare & Medicaid Services issued new guidance lifting all restrictions on visitation in nursing homes. After a year and a half of separation, residents and their loved ones are now able to visit inside facilities without restrictions on the length and frequency of visits. Read Consumer Voice’s summary of the new guidance and advocacy tips to help you visit with your loved one.
We want to hear from you about your experience with visitation since the new guidance was issued on November 12, 2021. Please answer the brief survey below. 1. Have you been able to visit with your loved one?…
As 2021 draws to a rather messy close, especially for people with disabilities, it’s time for another round of disability-themed New Year’s Resolutions.
Last year’s resolutions here were focused on disabled people’ s individual habits. This year, let’s look at resolutions for the disability community as a whole. There are scores of worthwhile goals. Here are a few that have the potential to make the most impact:
Make sure any normalization of Covid doesn’t leave disabled and chronically ill people unacceptably vulnerable.
The disability community started 2021 fighting for access to vaccination — a fairly straightforward battle. We enter 2022 fighting just as hard, but against more complex and diffuse problems
There may be no way now to completely eradicate Covid-19, or to fully protect the most medically and practically vulnerable among us from its effects. But it’s not out of the question that in 2022, we could do a better job not just with Covid itself, but how it affects the disability community. We can do this by squarely confronting the now familiar matrix of pandemic problems specifically affecting disabled and chronically ill people, including substantial overlap with the elderly. These familiar problems for us. But they are much too often forgotten or misunderstood by our nondisabled neighbors, government leaders, and even scientific experts.
If you’ve used a wheelchair for more than a few years, there’s a good chance you have an old manual or power wheelchair, maybe multiple, cluttering your garage, spare room or storage shed. Many of these chairs are in good condition and could be an upgrade for someone who doesn’t have a decent chair because of financial issues or because they need one right now, not in the six to 12 months it takes to navigate the system to get one.
I set out to see what options and resources exist to ensure that potentially useful chairs find new homes with people in need and not end up in landfills. Here is a look at places you can donate or sell a used chair to or find a used chair at no or low cost, and what to do with a chair that’s too well-used to save.
After a year of fertility treatments, Yael Geller was thrilled when she found out she was pregnant in November 2020. Following a normal ultrasound, she was confident enough to tell her 3-year-old son his “brother or sister” was in her belly.
But a few weeks later, as she was driving her son home from school, her doctor’s office called. A prenatal blood test indicated her fetus might be missing part of a chromosome, which could lead to serious ailments and mental illness.
Sitting on the couch that evening with her husband, she cried as she explained they might be facing a decision on terminating the pregnancy. He sat quietly with the news. “How is this happening to me?” Ms. Geller, 32, recalled thinking.
The next day, doctors used a long, painful needle to retrieve a small piece of her placenta. It was tested and showed the initial result was wrong. She now has a 6-month-old, Emmanuel, who shows no signs of the condition he screened positive for.
The tests initially looked for Down syndrome and worked very well. But as manufacturers tried to outsell each other, they began offering additional screenings for increasingly rare conditions.
The grave predictions made by those newer tests are usually wrong, an examination by The New York Timeshas found.
That includes the screening that came back positive for Ms. Geller, which looks for Prader-Willi syndrome, a condition that offers little chance of living independently as an adult. Studies have found its positive results are incorrect more than 90 percent of the time.
As her patient lay face down, Alissa Zingman gingerly felt the woman’s neck and spine for tension pulling her bones slightly out of place.
“It feels like I can’t breathe, like there’s an alarm going off in my head,” her patient said.
Zingman gently applied pressure to resolve the tension and coax the bones back into place. After a few minutes, the doctor’s thumbs and hands began to hurt. So she called over her assistant, an athletic trainer, to help.
“I have to be careful not to use too much force,” Zingman explained, “for my patients’ sake and my own.”.
For years, Zingman, 39, has struggled with the same rare affliction that plagues her patients – an incurable condition called Ehlers-Danlos Syndrome that causes weaker connective tissues in the body.
Zingman has sprained her thumbs in the past while working on patients. She’s partially dislocated her shoulder and ribs. She sometimes wears a dental appliance to protect her jaw.
The condition is so unusual, patients are often misdiagnosed or dismissed as hypochondriacs. Their joints slip in and out of place. Weak ligaments in their neck make it difficult to hold up their head. They often spend years wondering what’s wrong with them, ping-ponging between doctors unable to help them.
Social Security Disability Insurance exclusions are bankrupting and killing us.
Stop The Wait is the movement of Americans fighting to end these exclusions.
COVID-19 is forcing thousands out of work and on to Social Security Disability Insurance (SSDI). Many of us have disabilities that will prevent us from working again.
SSDI is a lifeline that we depend on to pay rent and buy food.
But the current system denies us SSDI for the first five months after we get sick, insurance benefits we have earned.
These exclusion periods are bankrupting and killing us. In the last 10 years, 110,000 people have died while waiting for disability insurance.
We’re telling Congress: End the five-month SSDI exclusion.
Read our open letter to Congress
We, the Stop the Wait Coalition members, write to ask you to give eligible people with disabilities access to the Social Security Disability Insurance (SSDI) and Medicare benefits they have earned…Show full letter…
Share your story
We’re collecting personal stories from people affected by the unjust SSDI exclusion periods.
Sign up, briefly tell us your story, and we’ll be in touch to help you get the word out! Share your story