If there was no pandemic, 21-year-old Colton McArdell would be spending his summer out of the house: swimming, bowling, going to church, riding his bike or hanging out with friends.
But COVID-19 changed his routine. Colton, who has multiple disabilities and is immunocompromised, has instead been confined to the family’s Shakopee home since March, where his mother Cyndi serves as his primary personal care assistant (PCA).
The isolation has been devastating. Before the pandemic, he was in a transition program in Chaska learning job skills — recycling cardboard boxes at Cooper’s Foods, folding napkins in an assisted living facility and delivering mail at the program’s district offices. All things his family never dreamed he could do, Cyndi said.
But the program temporarily shut down, and when Colton turned 21 in May, he aged out. Cydni has been searching for other options for years, but keeps getting turned down. Either there’s no staff members who can meet his needs, or not enough staff members at all.
“We looked so long for other PCAs and found nothing. He hasn’t had one since junior high. I went to so many places to see if they’d take him ... but now he’s at home, doing nothing. It’s so hard,” Cyndi said.
For those who need extra care — and those who provide it — the pandemic is escalating a problem that was already there: the lack of health and human services workers. With a dramatic need for services over the last few years, COVID-19 has caused staff numbers to dwindle even further, making it more difficult for families like the McArdells to get the care they need.
Cyndi tries to make the best of things. They still go on bike rides, the family plays games together and Colton loves to listen to music or use his iPad. But she can’t stress enough how tough isolation has been.
“You can tell he’s very depressed. He may be nonverbal, but he’s usually very happy-go-lucky and laughing. You don’t hear that much anymore,” Cyndi said.
A PCA’s day-to-day services are customized to suit each individual, but the goal is to provide assistance and support for people with disabilities or other specialized healthcare needs. Cyndi helps Colton with things like grooming, medications and eating on a daily basis.
But PCAs are just one part of a wide range of services. Respite workers offer relief for primary caregivers. Group homes and day programs like Colton’s provide opportunities to socialize and learn new skills. If the person is in public schools, they’ll have an Individualized Education Plan (IEP), which is created by the child’s parents and district personnel who are knowledgeable about their needs.
All are drawing from a similar pool of workers, and most are having a tough time finding people to fill the many open positions, according to Scott County Case Management Supervisor Katie Elleraas.
“This is hard work from both a physical and emotional perspective,” Elleraas said. “This kind of job takes blood, sweat and tears, you often have to pour your heart and mind into it. People can get burned out.”
The process of obtaining services and support in Minnesota is fairly straightforward — people call the intake line and a coordinator will discuss each family’s needs and values. The coordinator then sends the information to MnCHOICES, a state program that will assess and determine the amount of hours and funding they can receive. Ideally, families will have the documentation within 30 days.
The county then provides a list of independent PCA agencies that families can choose from. Oftentimes, family members like Cyndi will become PCAs themselves and get paid by the state.
It’s difficult to get exact numbers on how many people receive PCA services as they’re often intermingled with other programs, but there’s still a large disparity, Elleraas added. Heather Goodwin with Carver County Health and Human Services declined to share the number of residents utilizing PCAs.
Eastern Carver County Schools currently has 1,410 students receiving special education services on an IEP — equivalent to 12.5% of K-12 students, said Laura Pingry-Kile, ECCS director of Specialized Education Services.
The district employs over 150 paraprofessionals, who assist students with basic physical needs like grooming, dressing, eating and bathroom visits.
But with remote and hybrid learning, this school year upends normal district procedures. In the spring, paraprofessionals worked over Chromebooks to check in and offer daily interactions, including social and emotional support, Pingry-Kile said.
It wasn’t a welcome change for everyone — many parents said distance learning does not work well for their child and wanted them back in-person in fall, she added.
Those in the field are making changes to prepare for the long haul.
The state increased the number of hours per month a PCA could work from 280 to 310, and Gov. Tim Walz waived the face-to-face rules to allow telehealth appointments — making it easier to obtain and keep PCAs.
The district will meet with students’ IEP teams in the fall to discuss the best plan of action, and because they’re not mandated to a distance-learning model, they have some wiggle room, Pingry-Kyle said.
“We have the flexibility to invite some students into school for intervention given we adhere to strict MDH health and safety guidelines,” she stated.
But for Colton, who is not in school or day programs, options are still slim. Even if there was an end in sight, there’s nowhere to go, Cyndi said.
“Keeping my son home indefinitely is a big deal,” she said. “There is such a need, and so many people don’t know.”