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COVID-19 presents challenges to people with disabilities

When Jason Endres participated in a recent press conference held by the Survival Coalition of Wisconsin Disability Organizations, many people reached out wishing him well, including his former daycare instructor.

“Remembering somebody from 30 years ago, that’s just remarkable,” said Endres, who has spina bifida and uses a motorized wheelchair. “It shows that some people do care.”

That encouraging day marked an exception to what has otherwise been an isolating time under COVID-19 for Jason and Julie Endres, who has cerebral palsy and uses a motorized wheelchair. For people with disabilities, coronavirus has presented various challenges, from grocery shopping to socialization to a greater risk of being infected.

Jason, who is immunocompromised with hydrocephalus, which results in excessive fluid around the brain, doesn’t travel anywhere other than outside to walk their service dog. He signed up to be a poll worker in last month’s election but canceled his shift as a precaution.

“I didn’t want to take the chance of contracting (COVID-19), because I would be put in the hospital almost instantly,” Jason Endres said.

The couple also expressed concern about receiving the proper level of care if one of them had to receive treatment. Disability advocate groups have filed complaints in states including Washington and Alabama claiming health triage recommendations discriminate against people with disabilities.

Eau Claire County Board Supervisor Katherine Schneider is a blind person and worries medical treatment may not be evenly distributed.

“Those of us with disabilities live in fear that our needs will be met last, perhaps especially in times of crisis,” Schneider wrote in an April 2 column in the CV Post.

Schneider’s life has not changed dramatically in the past two months, but she called it difficult to stay inside and rarely interact with people.

“I’m pretty darn lucky; my life is quite fine,” Schneider said. “(But) could it be better? You bet.”

Barriers still exist for Schneider. In last month’s election, she voted absentee in-person but there was not a voting machine accessible to blind people. Schneider instead had a friend fill out her voting form, which worked but was not ideal.

Her County Board position has presented recent challenges as well. The County Board uses the platform Webex for remote meetings, but Schneider said Webex has compatibility issues with screen readers, which she uses for her computer. Those issues mean she has to call into meetings and not have access to visual presentations.

Christopher Wood’s day-to-day life has not substantially changed, though difficulties persist.

Wood has cerebral palsy and uses a motorized wheelchair. A caregiver visits him every morning, and Wood occasionally goes to a park with his parents. Based on positive previous experiences, he is not concerned about improper treatment if he needs health care.

Wood previously worked as a job coach for people with disabilities, but that occupation is not considered essential. Most of his days now are spent entertaining himself, often by going outside and listening to birds near his Eau Claire home.

Physical distancing measures have limited Wood’s movement. His wheelchair takes up additional space in buildings, so to minimize the chances of coming into close contact, Wood stays inside the vehicle when his family goes to a store.

Following physical distancing rules are difficult for Schneider as well. She doesn’t know how close she is to someone unless she hears them, so she encouraged people to greet her and say if they are on her right or left side when walking by her.

Several people with disabilities mentioned grocery deliveries having a longer wait time and rarely including all of the requested items.

“You get 85% of what you want if you’re lucky,” Schneider said.

The most significant adjustment for Jason and Julie Endres has involved fewer home visits from caregivers, who previously came daily. Now they visit every few days and must maintain physical distancing.

“We really can’t take the chance of them coming in as regular as they did beforehand, and when they do come, it has to be on a day nice enough that Jason can take the service dogs for a walk so that (caregivers) are not in the same space as him,” Julie Endres said.

Katie Kroll and her husband take care of three adult children with cognitive disabilities. Since COVID-19 started affecting all aspects of life in mid-March, the three of them have almost exclusively stayed at their rural home just outside Eau Claire. Visits every few weeks from a respite care worker have stopped.

Anna and Luisa Kroll both have fetal alcohol syndrome and cerebral palsy, and Anna also has rheumatoid arthritis. Andy Kroll is blind, has Down syndrome and has had multiple heart surgeries and multiple eye surgeries.

Anna, Luisa and Andy previously worked part-time at Chippewa River Industries and participated in several Special Olympics activities every week. Their days now involve walks in the country, house chores and gardening. They also have job training twice per week through Zoom.

The Endreses often utilize the video conferencing service as well for meetings and to keep in touch with friends and family. The tool has become crucial to personal connection, since their volunteer work has stopped and they rarely leave home.

“Thank goodness for Zoom; I think we’d go crazy without it,” Julie Endres said.

Jason is on several state and local councils and boards and often has virtual meetings.

“That keeps me somewhat connected, but really, it’s pretty lonesome,” Jason Endres said.

Wood misses simple pleasures like attending baseball games. He occasionally feels lonely but appreciates the spring season that brings warmer temperatures, more sunlight and the ability to be outside.

“It’s not much different than everybody else; I just want to go out and do things,” Wood said. “At least you can smell the air. If (COVID-19) would’ve been in November, the depression levels would have been pretty high.”

Katie Kroll said her three kids miss socializing in-person but have reacted well overall and shown resilience.

“They understand at a certain level that this is the right thing to do,” Kroll said. “They’re amenable and cooperative to most things, and despite the downsides, they’re going to roll with it and they’re going to be OK with it. They know at some level that it won’t always be this way, and so they can look forward to when they can get back together with their friends.”

One source of frustration for Katie Kroll involves increased demand for hydroxychloroquine, which Anna Kroll takes for rheumatoid arthritis. Demand for the medication, which also helps people who have lupus and malaria, has increased after President Donald Trump mentioned it could treat coronavirus. Little scientific evidence supports Trump’s claim.

The American Medical Association, American Pharmacists Association and American Society of Health-System Pharmacists issued a joint statement March 25 advising against disproportionate purchasing of hydroxychloroquine to treat COVID-19.

“Stockpiling these medications — or depleting supplies with excessive, anticipatory orders — and price gouging in the midst of a pandemic, have grave consequences for patients with conditions such as lupus or rheumatoid arthritis if the drugs are not available in the community,” the statement read in part.

Anna Kroll has an adequate supply of hydroxychloroquine, but her parents worry what could happen if it continues being purchased at high rates.

“People need to stop this; they need to get informed about this so that they know that taking hydroxychloroquine willy nilly is not going to work for them,” Katie Kroll said. “It’s scary, and there’s just no need for it.”

Kroll also becomes frustrated when people do not follow public health guidelines like social distancing or wearing masks. Kroll is not worried about her children receiving inadequate care, saying they have always been treated well in the past, but it is frightening to know the family would not be able to visit Anna, Luisa or Andy in a hospital if they needed care.

“People are being cavalier about the masks and the social distancing, and I wish they’d just follow the CDC guidelines,” Kroll said. “What if one of my kids would end up in the hospital, or my mother, and there’d be no way that we could spend any time with them? How horrible would that be?”

The effects are not all negative. When Schneider goes to stores, people usually offer assistance, a pleasant surprise. Some neighbors have picked up groceries for the Endreses.

The elimination of respite care visits has required Katie Kroll to provide more hands-on care, but that is a tradeoff she happily accepts.

“I’m betting that a lot of families are going to look back on this and, “You know, I got to spend time with my child that I never got to spend before, and now I know that person better,’ and maybe that’s the way life really should be,” Kroll said.

Kroll hopes that this situation helps residents understand that people with disabilities are often immunocompromised and need full participation from the public to ensure their safety.

“Whatever they do to protect themselves, they’re also doing to protect the disabled community,” Kroll said.


Daily-updates
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Bouncing through quarantine

When life gives you a pandemic, buy a trampoline.

Said no one ever.

Except my wife, who a month into the safer-at-home order, decided it was the most expedient way to persuade our children to get a little fresh air.

“Isn’t it also the most expedient way to get a broken arm?” I asked.

But after a month of being sardined alongside one another, we decided it was worth the risk.

To say that assembling a trampoline was more difficult than I expected would be an understatement. To say that it involved no four-letter words would be a lie. But it was all worth it to see my children’s smiling faces, which I observed from some newly earned distance.

Thanks to the trampoline, social distancing became easier for the kids. When trapped within its cage-like net, there was little chance of them coming into contact with anyone. An added benefit was that the trampoline allowed them to practice social distancing from their parents. After one particularly trying day of “home schooling,” they rolled their jampacked suitcases to their new bouncy home and promised they’d check in at Christmas. We wished them well, and then, 15 minutes later, enjoyed our grand reunion.

Yes, it was a happy time in our household — right up until my son’s symptoms emerged.

It started with a fever, then a cough, then a few other ailments that checked off the boxes we feared. My son took it in stride, though my wife and I didn’t. Under “normal” circumstances, such complaints would have hardly registered on our parental radars, but these were different times. We called the Mayo Clinic Health System in Eau Claire, and after an intensive pre-screening process, were told to take Henry to the drive-thru testing tent in the converted lot to the right of the hospital.

We masked up, then made the short trip to the tent, where we were greeted by a police officer whose job it was to tell us to keep our windows rolled up. Next, a health care worker held up a sign informing me to call a particular phone number, which routed me on to the next health care worker in the lineup.

“Hello,” said the health care worker on the other end, “I’m right here in the tent.”

Sure enough, the woman waved to us. What a comfort to see her masked face, and to know that someone just a few feet away would guide us through this journey. My son’s health wasn’t being outsourced to some medical call center half a country away; it was being handled locally, by a person who, were it not for her mask, I might recognize. She walked us through the process, then said, “If he tests positive, we’ll give you a call. If he’s negative, you’ll receive an email. Any questions?”

Since most of my questions were existential in nature, I simply thanked her for her time. And then, we pulled into the tent, where we were greeted by our final medical professional of the morning, this one protected behind a face shield. I rolled down the window to the appropriate level.

“Hi Henry,” the man said. “Could you sit on your Dad’s lap, please?”

Unbuckling, Henry climbed over the console.

Then, the man explained that he would soon insert a cotton swab into Henry’s nasal cavity.

“Will it hurt?” Henry asked.

“It won’t,” the man assured.

He was right; it all happened so fast there was no time for pain.

For the next 12 hours, Henry and I self-isolated from the rest of the family and prayed the phone wouldn’t ring. We whittled away the hours staring out the window as his little sister bounced carefree on the trampoline.

Suddenly the fear of a broken arm seemed trivial.

Was I scared? Absolutely. But not just of the virus. Equally troubling was what the virus had already revealed about who we are as Americans. That we would imperil our own lives for a day at the beach is bad enough, but that we would also imperil the lives of others to ensure our good time was nothing short of a moral reckoning.

It’s worth mentioning that most of our citizens aren’t at the beach. And that those who have been spared the physical toll of the virus are potentially paying a different price. To those who’ve lost jobs, my heart goes out to you. To those who have jobs but can’t work, I feel for you too. I don’t want anyone to lose a business, or a home, or a paycheck. I also don’t want anyone to lose a father, or a daughter, or a friend.

Many of us have been led to believe that we must have it one way or the other. While such a false dilemma does much to rally a base, it does little to heal a nation. Or, more pressing, find a solution that protects both our lives and our livelihoods. After losing over 70,000 Americans, we’ve passed the point of pretending that our actions don’t directly impact the people around us. What we do matters. Always, but especially now.

As I’ve observed, the same principle holds true on a trampoline. One child’s bounce alters the others’ bounce. If the bounces are ill-timed, the kids disrupt each other. But when timed right, both kids are propelled higher than either could have managed on their own.

Just before bed, my wife received the email.

“Negative!” she shouted. “It’s negative!”

Leaping from their beds and springing through the back door, my son and daughter reunited in a dogpile on the trampoline.

“We did it!” they shouted, though, in fact, they had done nothing to ensure this outcome.

Yet in doing nothing, they were doing everything that was asked of them. Day after day, they jump on their trampoline, they put up with their parents, and they keep everyone safe.

Tightening my bathrobe, I climbed onto the trampoline alongside them.

“Ready?” I asked.

“Ready!” they said.

Together, we sent ourselves soaring — defying gravity for as long as the world would allow.


AP
Poll: Most back curbing in-person worship amid virus

WASHINGTON — While the White House looks ahead to reopening houses of worship, most Americans think in-person religious services should be barred or allowed only with limits during the coronavirus pandemic — and only about a third say that prohibiting in-person services violates religious freedom, a new poll finds.

States have taken different approaches to resuming gatherings as the coronavirus continues to spread, raising tough questions for religious leaders and the faithful about the appropriate time to return. But the findings of the new poll by The University of Chicago Divinity School and The Associated Press-NORC Center for Public Affairs Research suggest that, even as President Donald Trump projects eagerness to reopen, many religious Americans are fine with waiting longer to return to their churches, synagogues and mosques.

Among that group is 54-year-old Andre Harris of Chicago, a onetime Sunday school teacher who has shifted his routine from physical worship to the conference calls his church is holding during the pandemic.

Harris, a Methodist, said that until “either there’s a vaccine, or if we know that things have calmed down, I am not comfortable going back to the actual building.”

Just 9% of Americans think in-person religious services should be permitted without restrictions, while 42% think they should be allowed with restrictions and 48% think they should not be allowed at all, the poll shows. Even among Americans who identify with a religion, 45% say in-person services shouldn’t be allowed at all.

White evangelical Protestants, however, are particularly likely to think that in-person services should be allowed in some form, with just 35% saying they should be completely prohibited. Close to half – 46% — also say they think prohibiting those services violates religious freedom.

That constituency’s support for some form of in-person worship underscores the political importance of Trump’s public calls to restore religious gatherings as a symbol of national recovery from the virus, as energizing evangelical voters remains a key element of the president’s reelection strategy. Trump won praise from some evangelical leaders for citing the aspirational ideal of “packed churches” on Easter during the first weeks of the pandemic, though his goal didn’t materialize on Christianity’s holiest day.

Trump has since consulted with religious leaders on a phased-in return to in-person worship.

“It’s wonderful to watch people over a laptop, but it’s not like being at a church,” Trump said during a Fox News town hall on Sunday. “And we have to get our people back to churches, and we’re going to start doing it soon.”

Vice President Mike Pence is set to meet with faith leaders Friday in Iowa to talk about their reopening of worship. Iowa is one of several states, including Tennessee and Montana, where restrictions on in-person services are starting to ease as stay-home orders imposed to stop the virus run their course.

That’s in line with the preference of Patrick Gideons, 63, of Alvin, Texas, who said worshipers “should be able to do what they want.”

“If they want to be able to hold church the way they normally do, they should be able to do that,” said Gideons, a self-described born-again Baptist.

As houses of worship wrestle with when to reopen, draft guidance by a team at the Centers for Disease Control and Prevention that offered recommendations for faith gatherings has been shelved by the Trump administration. While those guidelines aimed to help religious organizations use best practices to protect people from the virus, leaders in various denominations have already initiated their own internal discussions.

“Churches are very aware of the implications of people gathering in their buildings,” Kenneth Carter, president of the United Methodist Church’s Council of Bishops, said in a recent interview about the draft CDC guidance.

Compared with in-person religious services, Americans are more likely to favor allowing drive-through services, although most still say there should be limits. Overall, 25% think that those services should be allowed without any limits, and 62% say they should be allowed with limits.

The Justice Department last month sided with a Mississippi church in its legal challenge to local limits on drive-in worship. Still, the poll found 56% of Americans say prohibiting drive-in services does not violate religious freedom.

White evangelical Protestants were more likely than those of other faiths to favor allowing drive-through services without restriction, at 40%. In total, those who identify with a religious faith are more likely than those who do not to favor no restriction on drive-through religious services, 28% to 15%.

As many houses of worship have paused in-person services during the virus, a sizable share of religious Americans have used technology to connect with their faith. One-fifth of religious Americans said they watched live streaming religious services online at least weekly in 2019 — but since the outbreak began, that has risen to 33%.

About a third of evangelical Protestants streamed services at least weekly in 2019, but about half do now. Among Catholics, the share streaming services weekly has increased from 11% to 22%.

For members of the Southern Baptist Convention, when and how to resume in-person worship “would be a congregation-by-congregation decision,” Russell Moore, president of the Ethics & Religious Liberty Commission, said in a recent interview about the draft CDC guidance.

Moore predicted that some virtual worship would continue even as different areas transition back to in-person gatherings. Part of his work in offering resources to inform decisions, Moore said, involves “preparing churches for the fact that reopening probably won’t be one Sunday when everything goes back to the status quo.”

“Instead, there’s going to be probably a lengthy period of time where multiple things are happening at once,” Moore said.