by Daily Yonder, North Carolina Health News
September 7, 2020
From mental health strain caused by social isolation to life threatening circumstances, people with disabilities living in rural America are exposed to higher-than-average risks during the COVID-19 pandemic.
“We’re a population of higher risk individuals,” said Sierra Royster, the youth coordinator for the Association of Programs for Rural Independent Living, or APRIL. “So you don’t want to be infected because you’re definitely one of those people that can end up on the ventilator that isn’t provided.”
But some of the risks faced by populations with disabilities go beyond the danger of contracting the virus. Royster recalled a disabled friend who required a ventilator and recently passed away due to medical complications not related to COVID.
“Before she died, she posted that she was terrified because California was talking about people having extra ventilators, they were going to come around and take them because they needed them,” Royster said.
“For her, it was not an extra ventilator. For her it was her life that she depended on that extra ventilator for when one died. She had this backup so she can continue breathing.”
But centers for independent living stepped up to fill the gaps in care and help meet the unique needs of those with disabilities during the pandemic. Just like everyone else, centers had to adapt, going beyond their original mission, sometimes using previously overlooked tools and methods.
Scott Burlingame runs Independence Inc. Center for Independent Living, in Minot, North Dakota. “I’ve spent my entire career working on helping people with disabilities to get engaged as members of their community, which normally meant being part of their community,” said Burlingame. “And now I’m encouraging people to be safe, to stay at home, to maintain social distancing.”
His organization, like many other independent living centers across America, help provide crucial services to provide individuals with an opportunity to live independently at home.
In rural North Dakota, Independence Inc. served 650 people with disabilities ranging from ADHD, to substance abuse disorder, to quadriplegia last year.
Centers for independent living are often mistaken for assisted living facilities and other institutions that provide housing, explained Billy Altom, executive director of APRIL, based in Little Rock, Arkansas.
“That’s not what we are. Our goal is to ensure that folks can continue to remain in the community by helping them find whatever types of services they need, the transportation, housing, employment, you name it.’”
Altom also stressed that the popular perception of what “disabled” means can be misleading. Independent living organizations help with all kinds of disabilities and impairments. “Whether that be you’d start to lose your hearing, your eyesight starts to fade.”
Their goal is to teach real-life skills and provide services to “make sure that folks with disabilities can live in a community in the state of their choice,” Altom said. Founded in 1986, APRIL has 260 members “from Centers for Independent Living, their satellites and branch offices, Statewide Independent Living Councils, Youth Leadership Forums, and other organizations and individuals concerned with the independent living issues of people with disabilities living in rural America,” according to its 2018 annual report.
According to the U.S. Census Bureau, around 15% of the rural population, or about 9 million people, have some form of disability.
Serving Rural Communities
But individuals with disabilities in rural areas face higher risks during the COVID-19 pandemic, while often being left with fewer resources.
Mary Willard, director of training and technical assistance at APRIL, said that the true vulnerability of people with disability in the time of COVID-19 pandemic is the need to rely on community resources, which can be hard to get right now.
“For example, you might not be a young person, but an adult who needs a personal care assistant.” Willard said. “If you can’t get anybody into your home because they’re scared of getting COVID you have to go to a nursing facility. Or, you just all are going to have severe isolation. You know, you don’t have transportation options.”
In North Dakota, Independence Inc. covers 11 counties. Some of the communities the organization serves are considered “frontier communities,” a designation reserved for remote areas, often difficult to access and with limited or seasonally varying access to services.
Connie Klein from the Independence Inc. extension office in Bottineau, North Dakota, described going 150 miles to see one of the people she’s currently working with. That’s part of the transportation help organizations like Independence Inc. help to provide, limiting the need for individuals to travel vast distances on their own.
Her service area also includes two reservations, which means she has to observe tribal customs and make sure she adapts her behavior to precautions forced by the pandemic.
“You have to be very aware and respectful…Especially now with COVID, going out and wearing a mask when people can’t see your whole facial expression,” Klein said. “You have to be very aware and communicate maybe a little differently through voice so that they can hear the expressions that they can’t see on your face.”
Independence Inc. helps with delivering food to those in need in and outside of Minot as part of its services. Burlingame said that they’ve been relying on the help of volunteers, but some of the local stores that never offered deliveries before now do.
“A dilemma we found in that was that if you’re a person who is on SNAP benefits or food stamps, you actually can’t get home delivery of groceries if they don’t allow you to use your SNAP benefits to get home delivery of groceries,” Burlingame said. “So people who are perhaps the most vulnerable who are on SNAP benefits, couldn’t take advantage of that.”
Many working for independent living centers have disabilities themselves, which often informs their work. “Most of us at Independence are people with disabilities ourselves, working with other people with disabilities, you know, so I try and take that into [account] what do I need? And what can I do?” Klein said.
She helps with food delivery herself.
“I do shopping for people, three main people that I’ve done shopping for, they’re elderly, and so it keeps them from having to go out into the mall,” Klein said. “I’ve done grocery shopping, personal product shopping for them, and drop it off to them at their door.”
But whether it’s Billy Altom and his team at APRIL, or Connie Klein and Scott Burlingame at Independence Inc., one thing remains the same. Most of the adaptations to the new realities of the pandemic took place online. That, once again, put the spotlight on access to reliable broadband in rural America.
Burlingame said that the pandemic has been a complete game changer for his organization. Everything from awareness training for schools across 11 counties they serve to cooking workshops to legal advice on navigating COVID-19 reality had to move online. “A big thing that we’ve had to do recently is help people apply for unemployment insurance and things like that.”
Paul Jones, project manager at AgrAbility, an organization that works with farmers with disabilities, took notice of poor or spotty broadband access complaints recurring among farmers his organization works with.
“We’ve definitely heard that. So, in some cases, you know, the technology is just the phone. It’s just, that’s really the main way of being able to connect. But I know from personal experience that our staff have been affected by that all the way up to our national project leader.”
Jones said that there is a silver lining to the technology side of the pandemic. While his organization helps farmers get connected, it also realized that a lot of new technologies and new ways of doing things could become a staple even after the pandemic is over.
“We have been forced to, you know, look at these new technologies that a lot of people haven’t had the need to use before,” Jones said. “So even I think when things open up more fully, we’ll still have those tools available to us to be able to augment at least what we’re doing right.”
APRIL’s Altom said that some centers get creative. “What some of the centers have done to stay in contact with their folks, is buy hotspots for them. So that they can then use their phone to hook into Wifi or their computer to get into Wifi.”
Sometimes access is not the main obstacle. Back in Minot, Burlingame recalled that some among the older generation need a little bit of convincing when it comes to getting on devices designed for the internet age.
“So sometimes, you know, the problem is just, they’re not interested in it and again, that’s when you deal with our older folks,” Burlingame said. “They’re like, ‘I don’t need those contraptions.’”
But with the pandemic extending into the late summer and new school year just around the corner, education has been another area tightly connected to technology and broadband issues.
“When you start talking about specifically young people with disabilities, the biggest problems that they are seeing are in school, whether it is a university, or whether it is somebody that is in K-thru-12 education, their accommodations just aren’t being met,” said APRIL’s Royster.
For example, a lack of dedicated online platforms means that it’s hard to provide extended time to students who need it during tests, because of technical limitations of the software.
Royster said that in the beginning schools were so preoccupied with figuring out the new normal of online schooling for the majority, special accommodations were set aside for later.
“And in some places they just said we can’t figure it out. Sorry, do your best,” Royster said.
She recalled several conversations with college students who failed the majority or all of their classes because their accommodations weren’t met, leaving them in an impossible situation.
Similarly, SAT and ACT exams that are a crucial step on a path to college are a major obstacle for students with disabilities during the pandemic. “So their grade point average is dropping and then you’re basing this off of a test that really hasn’t shown their overall success anyway, but now their accommodations may not have been covered while they were taking the SATs and ACTs,” Royster said.
Recently, however, schools began to suspend SAT and ACT exams for the foreseeable future in response to the pandemic. Currently, around 80 colleges and universities, joined by the University of California system, put the testing on hold, reported Politico.
Paired with economic factors, rural students with disabilities face odds that are far from being in their favor. Although Royster pointed out that there are states that are doing good work when it comes to the mental health of their disabled students, those that don’t have sufficient funding are left with almost nothing.
“Those counties and those school areas where they don’t have a lot of funding, and they didn’t have enough counselors and support staff, social workers or anything like that in the schools, they actually have no support now,” Royster said.
Burlingame’s Independence Inc. serves a large younger population and often helps with mental health issues and addiction. For these individuals, the pandemic meant being cut off from their support systems.
“And getting used to being able to do that [counseling] over Zoom is just different,” Burlingame said. “For people that are in inpatient treatment, it’s very limited.”
”We, unfortunately, had a bad stretch of overdoses, right in the early stages of this. And that was difficult because people knew people who were using…perhaps to get through the pain, you know, and the reality is when bad stuff happens, sometimes people relapse and we had a really rough stretch over there for a while just trying to get used to the new normal.”
Independence Inc.’s Klein said that her work now involves extra check-ins via text or Skype, providing referrals to mental health professionals and counselors. But it’s not only a lack of access to in-person therapy that causes mental strain on people.
“Somebody may not see another person and be able to even be in the same room with another person for weeks on end. And so that’s really been a struggle for a lot of the people that I work with…you know, it’s one thing to pick up a phone and call somebody, but just to visually see somebody has been a real struggle with many of the people that I’ve worked with,” Klein said.
Suicides among young people are of great concern as well. “And if your home life is already a trigger for you or one of the causes of your major depression or anxiety, you’re stuck there and you have no out,” APRIL’s Royster said.
She recalled that since the begining of the pandemic eight individuals under 30 years old she knew personally committed suicide.
“It just seems like people with disabilities in the rural areas are used to not being served…because they don’t have access to all those other things,” Independence Inc.’s Klein said. “And so that’s become: ‘Very well, I didn’t know anybody who would be able to help me with that.’ And the pandemic has changed that…we were getting the word out that there are different services.”
By and large the state and federal governments have failed to adequately address the issues of disabeled population in rural areas and across the country, advocates say.
“There was an incredible lack of thought about people with disabilities during this COVID response and that’s putting it mildly, ” said Ellisa Ellis, APRIL’s Director of Operations.
“Upwards of 60% of the deaths in some of these states were in congregate care settings…I think it was Governor Cuomo in New York, who is now touted as one of, you know, the leading leaders in the country for his response, made a grave error and started sending people to nursing homes which just exploded the COVID caseload in congregate care settings.”
Now, some of the people Klein works with in and around Bottineau, North Dakota, are worried they won’t be able to transition back out to their home again.
But according to Ellis, it wasn’t just nursing homes that exposed disabled individuals to more risk. Prisons and other settings with massive populations did see dramatic numbers of cases, including among their disabled subpopulations.
“Response to COVID as it pertains to people with disabilities has been just abhorrent, not even an afterthought,” Ellis said.
Not all disabilities are the same and some allow for working even in the most demanding conditions. That’s the case of Dillion Foley, a 16 year old farmer from Maine. Together with his family, he raises cattle.
Dillion has a rare form of muscular dystrophy, but he’s still able to be out in the field and work. Between him haying in the field and hiking on his days off, it took us several emails to figure out a good time to chat over the phone.
According to Foley, he wasn’t very affected by the pandemic itself. He said that in his case, the disability is more of an adaptation challenge.
“I just kind of had to learn my limits, so I don’t overdo anything. I had to figure out ways to get in and out of machinery if my legs were acting up,” Foley said.
But having in-person school canceled proved to be a different kind of challenge. With plenty of time on his hands, he took to working more on the farm. “I was online. So I was working a lot more. So I just had to take things a little slower,” he said.
Foley is considering working closer with AgrAbility in the future and helping with outreach to younger generations of farmers with disabilities.