Michael Chambers, who has Down syndrome and is on the autism spectrum, lives in a community home managed by Keystone Human Services. Even in the pandemic, he receives constant care from direct support professionals.
‘They’re the front lines’; Staff care for adults with disabilities amid pandemic, funding challenges
“Not being able to see Michael has been probably the hardest.”
By Ron Southwick/PennLive
What you should know
» Coronavirus facts & FAQ
» Day-by-day look at coronavirus disease cases in Pa.
» Red, yellow, green: What to expect in each of Pa.’s tiers for reopening
Dr. Jennifer Chambers hasn’t seen her son, Michael, in weeks.
Michael, who is 24, has Down syndrome and is on the autism spectrum. He lives in a community home in Harrisburg managed by Keystone Human Services. To reduce the risk of exposure to the coronavirus, community homes for those with disabilities aren’t allowing family members to visit.
It’s a necessary precaution and a heartbreaking one.
“I practice not tearing up to talk about it,” Chambers said. “Not being able to see Michael has been probably the hardest.”
Chambers said the staff in the homes have made the situation bearable. The coronavirus pandemic underscores the essential work of those known as direct support professionals.
Across Pennsylvania, more than 50,000 direct support professionals play an indispensable role in the lives of those with disabilities. Some help with running errands for those with a level of independence, while some provide round-the-clock assistance with meals and showers.
Their work isn’t done remotely.
They face the challenges of helping their clients cope with a radically changed environment. For those with disabilities, the loss of routine due to the coronavirus has been particularly distressing, advocates say.
The field typically has a high amount of turnover even without a pandemic. Now, some have quit because they’re worried about being exposed to the virus, advocates say. Some providers are at risk of going under, said Mark Davis, president and CEO of Pennsylvania Advocacy and Resources for Autism and Intellectual Disability.
Advocates such as Davis and others said it’s critical for Pennsylvania’s state government to provide more money to non-profit organizations to help retain direct support professionals.
“We’re really worried this system we’ve worked so hard to build for folks to give them independence and autonomy, that this system will be decimated,” Davis said.
In a recent news conference, Pennsylvania Health Secretary Dr. Rachel Levine thanked the direct support professionals who are risking their own health to care for those with disabilities.
“Your hard work and dedication and bravery have not gone unnoticed,” Levine said.
The direct support professionals aren’t just caregivers in the pandemic. For parents, they are a lifeline to stay connected to their children.
Learning to cope
On Sundays, the Chambers family would typically spend the day with Michael. They’d go to church and spend time at their East Hanover Township home, swimming in the pool in warmer weather.
“Sundays are my Michael day,” Chambers said.
Because of the pandemic, the Chambers family couldn’t see Michael on his birthday in March. The staff at the home sent a picture of Michael with birthday cake.
“That was a tough day,” Chambers said. “We knew we couldn’t celebrate with him.”
Michael’s routines have been altered because of social distancing measures. He used to volunteer with Meals on Wheels but that has stopped.
The Chambers family tried to engage Michael with video chats via FaceTime a few times but it didn’t work.
“He didn’t understand why we weren’t there,” Chambers said. “It was more distressing than helpful.”
Chambers, the chairwoman of the board of directors at Keystone Human Services, said the work of the direct support professionals has made the situation more bearable.
“We always feel better when we talk to the staff,” Chambers said.
She said he’s thrived since moving into the home two years ago. Now, she said, Michael views the community home as, truly, his home.
“He has spread his wings,” Chambers said. “He’s using more words. I’d say it’s been a positive change on that front. We wanted him to have an independent life.”
The staff have taken Michael for walks, choosing parks that are more isolated. They’ve also taken hime for drives.
Chambers said the direct support professionals have provided great comfort.
“These are people that often have to work second jobs,” she said. “It’s not a role that is paid very well. It’s exhausting.
“The sustainability of these programs is based on direct support professionals,” she said. “They’re the front lines. They’re doing the work to help our loved ones.”
‘There’s no social distancing’
Jamiya Campbell has worked as a direct support professional for four years.
She works with 18 individuals with intellectual disabilities, whose ages range from the mid-40s to the late 80s. She works with adults who have a fair amount of independence but need some support. Some of her clients regularly went to work before the crisis.
A Lower Paxton Township resident, Campbell supports them with day-to-day tasks, such as helping them go to the grocery store or to appointments with their doctors.
Campbell takes precautions, wearing masks and gloves. When her clients are within six feet, she asks them to wear a mask.
“There’s no social distancing when it comes to this kind of job,” Campbell said.
Some of her clients are huggers, so Campbell tells them, “Let’s do air hugs.”
To protect her clients, she has taken the stay-at-home order seriously in her personal life. Other than grocery shopping, she stays home when she’s not working to limit the risk of passing the virus to her clients.
Campbell said she helps her clients manage their emotions during the pandemic. Those with jobs can’t go to work.
“They can’t go outside with their friends. It’s really hard for them,” Campbell said.
She’s tried to keep them occupied, bringing puzzles and coloring books. “We do movie nights,” Campbell said.
“I tell them I’m here to help you just like you’re here to help me,” she said.
Campbell said she gives parents frequent updates to offer more reassurance.
“They are very grateful for us,” she said. “It’s very comforting to them knowing their kids are in good hands.”
Campbell said the crisis has helped her form a deeper connection with her clients.
“We’re getting to know them better,” she said. “We talk about things we’d never talk about.”
“Some of them love to cook. Some can cook in their crock pot. Some listen to really loud music,” she said.
Campbell was asked about the state’s health secretary salute to direct support professionals for putting themselves at risk.
“I don’t look at it as risking my life,” she said. “I’m doing my part and that’s all I can do. I’m taking care of them.”
“This is something I love doing. It’s a different day for me every day,” Campbell said. “I really love caring for people.”
Charles Hooker, president and CEO of Keystone Human Services, said the governor and lawmakers need to understand the vital role of direct support professionals.
“We would like everyone to understand the significant difference Direct Support Professionals make in the lives of adults with an intellectual disability,” Hooker said. “With the support of DSPs, people with disability live full and active lives in their communities. We urge the governor and the legislators of Pennsylvania to adequately fund these essential and life-saving services and show their support for these heroic front-line workers.”
Aiming to boost spirits
Debbie Gilson-Will manages a community home for Penn-Mar Human Services in Manchester, Md., just across the Pennsylvania border. The residents are women whose ages range from their 20s to their 40s.
Some work outside the home or would typically go to day programs. That’s not happening now.
One resident lost her job but was told she’d be rehired when the pandemic was over. “That was very upsetting,” she said.
“We’ve noticed an increase in different diagnoses, some withdrawal, some depression,” Gilson-Will said. “When you have people with disabilities, they’re used to a specific routine. And you’re changing the routines, they’re going to get upset.”
The residents miss going to restaurants. “The fact they cannot go out to eat has been a challenge,” she said.
The staff tries “everything and anything we can think of” to engage the residents, she said.
“We are taking them for walks as much as they are willing to go,” Gilson-Will said. “We have a basketball hoop and we try and get them to play. We have badminton and a soccer ball.”
“We had a big Easter egg hunt and everyone got baskets,” she said. “That kind of brought their spirits up.”
While it’s been tough for the residents, she said they’ve been “amazing” at adapting. And Gilson-Will said the staff are pouring all their energy into boosting the spirits of the residents.
‘We’ve always had a philosophy that no matter what’s going on, we put a smile on our face we put all our energy into making them happy,” she said.
Challenges in staying connected
Tim and Ann Battaglia haven’t seen their daughter, Katie, in weeks. Katie lives in the community home operated by Penn-Mar Human Services.
Katie, who is 30, has Lennox-Gastaut Syndrome, a severe form of epilepsy. She has seizures and attention deficit issues.
“She calls every couple of nights, wanting to come home,” Tim Battaglia said. “She’s getting a little more adamant.”
Before the pandemic, Katie would spend her days in a program run by Penn-Mar. That has been put to a halt due to the coronavirus.
“Just losing that routine of getting up in the morning, going to the day center” has been difficult, Tim said.
She enjoys going to restaurants, which isn’t possible right now. And she loves going to baseball games in the spring and summer. Katie is one of the world’s biggest fans of the Baltimore Orioles, her father says, and she enjoys going to see the York Revolution.
Katie has some understanding about why life has changed. The staff have talked about the virus but haven’t overwhelmed her with the news.
“They’re doing a really good job of explaining,” Ann said. “They give her just enough of the news for her to understand.”
She goes on walks around the property and the staff has taken out for drives.
“They took her to the ballfield the other day to run the bases,” Ann said.
In the past, the Battaglias would bring Katie home for a weekend every two weeks. That’s not happening and Katie’s upset about it.
“It’s tough to explain to her that we’re not being mean,” Ann said. “It’s hard for her to understand sometimes.”
The staff at the home have offered invaluable support. It goes far beyond taking care of Katie, they said.
“They’re family,” Ann said. “It’s a bond that you cannot believe happens between them.
“It’s a bond that you need,” she continued. “As a parent, I need to know those guys love Katie as much as I do.”
Tim added, “They are devoted because it’s definitely not for the money.”
PennLive and The Patriot-News are partners with PA Post.