By Bonnie Jean Feldkamp, 100 Days in Appalachia
Using technology to enhance education is normal for ten-year-old Cora Maddox from Boone County, Kentucky. She has severe apraxia which her mom Angie Maddox said “is like being trapped in your own mind.”
Cora understands everything that’s said to her, Angie explains, but when her brain tells her mouth an intended response, it becomes jumbled. Cora is not easily understood by everyone, so she uses a communication device that helps. “It’s like a super iPad,” Angie said.
Education for any child is a partnership between the parents and school. Add special needs to that mix and now that partnership becomes a team requiring proper evaluations, medical diagnosis and therapies provided during the school day to help every child learn to their greatest potential.
Then COVID-19 happened. Routines were disrupted, parents shifted to working from home – if they were working at all – and everything required access to the internet.
But in rural communities across Appalachia, access to the internet is not guaranteed. The Federal Communications Commission reports 97 percent of Americans have access to high-speed internet, but when you look solely at rural communities, that number drops to 65 percent.
The Maddoxes have access, but reliability is maybe a different story. Angie is a stay-at-home-mom. Then when COVID-19 forced her family, including 13-year-old son Clay, to socially distance at home, she added teaching and therapy assistant to her daily routine. Her husband Donnie also works from home due to the pandemic and spends most of his day online. Angie said some days it was hard for their internet to keep up. Clay would frequently say to his mom, “You got to reset the wifi, we’re all getting stuck again.”
But internet-based educational and therapeutic services were, and in some cases continue to be, the only way families in Appalachia could access the specialized care they need while COVID-19 has most of us still limiting where we go and how many people we expose ourselves to. In some instances, speech and physical therapists say it’s forced them into alternative care options that have been beneficial for their patients. But for others, it’s meant giving up those services altogether, at least for a while.
The Challenges of Learning from Home and Nontraditional Instruction
Cora was adopted from South Korea at just under a year old. Neurologists at Cincinnati Children’s Hospital determined that her birth mother suffered some sort of trauma sometime between 24 and 28 weeks gestation – maybe she fell down stairs or was in a car accident. Whatever the trauma, it caused injury to Cora’s developing brain.
Periventricular leukomalacia, or PVL, is her formal diagnosis. Cora requires a lot of support for learning, which Angie said went okay at first, but about two weeks after her school district transitioned their classrooms to online learning, Cora’s school-issued Chromebook stopped working. The Maddoxes had to exchange it for one that wasn’t a touch screen like Cora was used to, which took additional adjustments.
Nontraditional Instruction (NTI) began with a lot of tears from both Cora and her mom. “It’s out of her normal routine and she thrives in routine.” Time with her teacher was shifted to online “meets” in between assigned work, after which Cora would sometimes cry and say, “I just want to hug my teacher.”
But the changes didn’t stop with schooling. Speech therapy sessions also went online, which Angie said were slightly easier. Cora has face-to-face therapy that focuses on mouth movements so an online video platform, while different, allowed that therapy to continue.
But now that school is out, Angie would typically be looking for alternative sources for the educational and therapeutic services Cora needs, but, like so much of our lives, the coronavirus pandemic has changed that.
In previous summers, Cora attended summer school through Boone County schools and also went to Redwood for therapy, an organization in Fort Mitchell, Kentucky, that provides services to children and adults with severe and multiple disabilities. Cora is attending summer school again this year but won’t receive speech therapy. Angie had to get on a waiting list for Redwood’s services last year, but this year, time got away from her. “By the time I thought about it, I thought it was too late. So, I honestly didn’t even reach out – it was too overwhelming with school stuff.”
Instead, Angie said she will work with Cora on her own, on a daily basis. “We have a lot of speech therapy tools at home that we’ve collected over the years,” Angie said.
“Families need to make the right decisions for them and for the safety of their children as we’re all doing to distance ourselves and lessen the spread of the virus,” said Brigitte Blom Ramsey, President & CEO of the Prichard Committee for Academic Excellence in Lexington, Kentucky. “So, it seems like a natural family response to say, ‘we’re just kind-of doing what we can at home right now.’”
What does teletherapy look like?
At Redwood, Cora’s therapy provider, the pandemic restrictions required staff to fully switch to televisits.
Peggy Farmer, director of therapeutic intervention, said for some parents who were also transitioning their children to online learning, the additional adjustments were just too much. But now that school is out and many families are more familiar and more comfortable with remote learning, those families are beginning to come back to Redwood more welcoming of the new delivery model.
“It was a big change,” Farmer said. “None of our therapists had ever done teletherapy.” But mid-way through March when governor Andy Beshear began closing businesses and placing restrictions on health care services, Redwood started researching teletherapy. “Our therapists took webinars, and we consulted with therapists [outside the organization] who successfully lead teletherapy sessions.”
Teletherapy means instead of scheduling an in-person appointment with a therapist or mobility specialist, a family schedules a video call with a therapist to learn and practice exercises specific to their child’s diagnosis that are important for their developmental progress. Redwood provided speech, physical and occupational therapies remotely and, like everything else, it worked really well for some patients while others struggled due to technology or other barriers related to their diagnosis.
Physical and occupational therapy, “well it’s a little tricky,” Farmer said, “because the tools we would use in face-to-face therapy aren’t going to work during teletherapy.”
Teletherapy, in many cases, requires family involvement. Redwood mails families items such as exercise bands used during the sessions. Once received, the therapist can direct the family in exercises, watch them perform them and then help them make adjustments. “The therapist has to really walk the family through each exercise,” said Farmer.
Televisists are a great option for those who have internet access. But for those who don’t, it’s a real roadblock to receiving care.
Some of Redwood’s patients have had to rely on data through a smartphone for teletherapy sessions, but in more rural areas, data can be expensive. Also “It’s a little easier on a computer when you have a bigger screen,” Farmer explained. Without internet access or a smartphone, Farmer said, “unfortunately, therapy has to stop for those families for a while.”
Are Teleservices the Future?
Redwood is working on putting physical therapy kits together and offering at-home strategies for some clients who are unable to do teletherapy, which isn’t ideal, especially when The Prichard Committee for Academic Excellence, a non-partisan advocacy organization that promotes excellence and equity in education for Kentucky children, is pushing for the “next normal.”
For Prichard Committee President Ramsey, that means “really utilizing technology in a way that maybe we haven’t fully realized in the past.” The Prichard Committee believes there are “real formalized ways that these services can be provided as a touchpoint for students and their families.”
An innovative and technological future that provides services during extreme times while underscoring services regularly, is an ideal that comes at a cost to populations already underserved.
“This pandemic and the displacement of our students from schools, and families from the workplace – so that we’re now working remotely and learning remotely – is shining a light like no other on the inequities that exist in our state,” Ramsey said, “and we have to fix it with great urgency.”
The Prichard Committee has issued a call to action to Congress to provide funding for states to build universal broadband access for low income families who find it difficult to purchase the service, as well as for rural families where the service may be nonexistent or fragile at best.
“Access to broadband and the devices to effectively utilize broadband technology is critical, and there is a role for Congress to play here to ensure the states have the resources to make the technology available to all families,” Ramsey said.
According to The Prichard Committee, “In 2017, Census data showed that Kentucky ranked 44th in the nation for broadband access.” Ramsey stressed that internet access “is as important as electricity and plumbing.”
Congressional movement doesn’t happen quickly and the need is real and right now, amplified by this pandemic. In the meantime, school districts as well as college and technical systems have provided hot spot areas for families throughout Kentucky. Companies like Mountain Rural Telephone, Peoples Rural Telephone (PRTC) and Thacker-Grigsby Telephone in the mountain regions of Eastern Kentucky joined them, taking the Federal Communication Commission’s Keep Americans Connected Pledge to provide free hotspots for their communities while many public services were shuttered.
It is unclear how many of these hotspots will remain active throughout the summer as libraries and other public services begin to slowly reopen.
What is clear, however, is that the need for teletherapies and nontraditional instruction during this pandemic sets a connectivity precedent for the future.
“I see the real benefits of going through all of this,” Farmer said. Now that therapists at Redwood have become proficient with providing therapy digitally, there are certain cases where Farmer would like to see it continue. “We have families in more rural areas with transportation issues for whom this would be the perfect solution.”
For others, face-to-face therapy will remain what’s most effective. As pandemic restrictions begin to relax, Redwood will reopen on site therapy services June 15. In some therapy rooms, they’ve installed plexiglass dividers so that speech therapists can work without a mask on but still be protected. They will also gradually resume in-person sessions for some of those families who have been unable to access or didn’t have success with teletherapy. Farmer said, “some children with autism just didn’t have the focus to be able to attend a teletherapy session.”
Families will soon be able to bring their children to the door but will not be able to go inside. “We have a security process in place where temperatures are taken of the parent and of the child and questions are asked before we escort the client back to therapy,” Farmer said.
Structure and schedules are important for families and they are about to be disrupted once again. “We have been very cognizant of that,” Farmer said. “We’ve been through so much change and clients may not understand what’s happening.” Weekly check-ins have helped families cope, but Farmer also understands that as patients return, there will be another period of adjustments and therapists will “probably see some behavior issues because families routines are going to be changed again completely.”
The Maddox family also sees a positive side in navigating education and therapy as a family during the pandemic. Angie has a better understanding of what Cora is capable of, a greater appreciation for Cora’s special education teacher and has also witnessed how compassionate her son Clay is toward his sister.
“I have learned that school is really so much more than just education.”
This story is part of the SoJo Exchange of COVID-19 stories from the Solutions Journalism Network, a nonprofit organization dedicated to rigorous reporting about responses to social problems. View the original story here.