Siblings Ellen and Steven Hartman, both born with Down syndrome, live in separate group homes. They are struggling to understand what's happening.

Ellen Hartman doesn’t really understand. 

She’s frustrated that she can’t go out. She’s frustrated that she can’t visit her sister or see her father or go work. She doesn’t want to get sick or make other people sick.  

But she doesn’t really understand. She’s confused. And she’s anxious. 

She spoke with her sister, Melissa Robertson, on the phone, and her sister tried her best to explain. She tried to allay her fears. She tried to tell her that everything is going to be OK. Some day. 

But she wants to know when it will be OK. She wants to know when she’ll be able to go out and go to dinner or to church or to visit her father or just return to the life that she’s known the 45 years she’s been alive. 

Her sister tries to tell her that she doesn’t know. Nobody knows.  

For now, her sister tells her, “People are getting sick, and we don’t want you to get sick.” Her sister tells her, “We have to do what the governor says to stay safe.” 

Still, Ellen doesn’t understand. 

But then, who does? 

More: Workers who care for people with autism & intellectual disabilities struggling in pandemic

'A great deal of anxiety'  

Ellen and her brother Steven both live in group homes, both having been born with Down syndrome.  

They live in separate homes operated by Jessica & Friends – Ellen in the Sarah Kathryn Home in York Township, and Steven in the Tri-Hill Home in Spring Garden Township.  

For those with special needs, and who live in group homes, these have been trying times. And for those who operate the homes, it’s also been difficult trying to explain what’s happening — a global pandemic that has forced the country to shut down — without causing undue anxiety and stress while trying to protect their residents and staff from the ravages of the pandemic.  

The paramount concern, of course, is keeping people safe, both residents and staff. Those who reside in group homes, because many have underlying health conditions, are particularly at risk of becoming gravely ill should they contract COVID-19. Some staff wear masks, something that, for some residents, causes increased anxiety. Measures to stay safe, washing hands frequently, for instance, also add to that. The safeguards have worked, so far. There haven’t been any cases of infections in the seven group homes in York County operated by Jessica & Friends, according to Kim Gockley, the organization’s director of programming for Jessica & Friends. 

“There’s a great deal of anxiety,” said Gockley. “Residents ask, ‘When will I be able to go back to work or when will I get to see my family.’ We tell them we don’t want to see people get sick. We don’t want people to die. 

“There’s a lot of frustration and anger and sadness. We just have to be patient and understanding.” 

Ellen and Steven's large loving family 

Ellen and Steven had the luck to be adopted by Walter and Joan Hartman, a selfless couple whose love of children and devotion to their well-being knew no bounds.  

The couple had five children of their own and adopted four others. Over the years, their daughter said, they had 30 or 40 foster kids.  

“It was their life,” one of their daughters, Melissa Hartman, said. “My parents just had a lot of love for children. They took care of children all of their lives.” 

And they took care of Ellen and Steven.  

Ellen doesn't want to get sick 

When the Hartmans adopted Ellen, they were told she wouldn’t live. She was born with a hole in her heart and Down Syndrome. When the Hartmans adopted her as an infant, the doctors told her she probably wasn’t going to live long. She was what’s known as “a failure to thrive child,” Melissa said. A doctor told Joan, “Take her home and do what you can do for her, but she’s going to die.” 

Joan told the doctor, “No way.” She never saw that doctor again. 

Joan stayed up at night and constantly cared for and fed Ellen.  

Ellen survived, and at 6 she had surgery to repair her heart, her sister said.  

She has lived in the group home for about 18 years, sharing the house with three other women, house manager Jodi Bird said. The women have lived together for a long time and are like sisters. Jodi has been working at the home, living in an apartment attached to the house, for 10 years and is like a mother to the girls. They are like a family, and Jodi loves the girls. A decade ago, she had been working as a hairdresser, and Paulette Teague, who founded Jessica's Friends with her husband, Peter, convinced her to visit. She fell in love immediately.  

Ellen is sweet, her sister said, and she loves her family, her home and her church. She likes to go shopping and out to eat and to the gym. Well, the gym, not so much. Her sister said she’s not missing the gym during quarantine. She loves singing and dancing. “Ellen lights up the room,” her sister said. 

She gets frustrated sometimes, and that spills into anger, but, Bird said, “She can’t help it.” 

“She is extremely frustrated,” Bird said. “It’s very hard for her to process the severity of what’s happening.” 

She wants to go back to work at Shadowfax, an organization that provides services and jobs for those with special needs. She doesn’t understand why she can’t. She will understand when she says she has to go to work tomorrow, and her family and caregivers tell she can’t because they don’t want her to get sick. But then, a few moments later, she’ll say, “I have to go to work tomorrow.” 

Nor does she understand why she can’t visit her sister and the rest of her family. Or go out to eat. Or anything. She does understand that people have become sick, and she doesn’t want to get sick.  

Her family hasn’t told her that people have died. She would have a hard time comprehending that. She fears death. Her mother, the woman who nursed her to life, who brought her back from the brink of death, who loved her like no other, passed away four years ago — pancreatic cancer — and she fears that she’ll lose her father, who’s 88. 

She understands the concept of death. But, her sister said, “We don’t use the word ‘die.’ We’re careful about what we tell her.” 

'The life of the party'  

Steven, Melissa said, “is the life of the party. If you met him, you would know it.” 

His sister said, “He likes to poke at people. He grew up with eight siblings, so that’s to be expected. He has a good sense of humor.” 

His parents adopted him when he was 2. Before that, he was in an institution, living in what amounted to a cage, a crib attached to a wall, his sister said. When he was a toddler, his sister said, he could barely stand upright. Now 44, he is fairly independent, working at SpiritTrust Lutheran nursing home in the hair salon and volunteering at his church, Church of the Open Door in West Manchester Township. He also goes to day programs and does some cleaning work for Jessica & Friends. “He’s usually very busy during the day,” Melissa said. “He’s very social. He loves to go shopping and take tours of factories and doing volunteer work. He’s a very outgoing and extroverted person.” 

Being on lockdown has been hard for him, his sister said, but he understands the importance of staying safe. And he understands what’s going on. He watches the news and has a laptop and a smartphone to get on Facebook. “He’s not used to staying home,” Melissa said, “but he understands and is concerned about going out and getting sick because it can kill you.” 

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'I just wish I could protect them'  

Melissa stays in touch with her siblings over the phone and on FaceTime and Skype. It’s not the same, though. 

“I miss them desperately,” she said. “I’m anxious to see them and hug them.” 

She wishes she could bring them into her home and keep them sheltered there while the pandemic plays its course. But she can’t. For one thing, she said, if they leave their homes and are gone for what could be months, they might lose their spots. And the homes are, well, their homes. Their housemates and caregivers are part of their family. 

“I would love to pick them up and bring them here until this is over,” Melissa said. “But if I brought them here, they would want to be home. It’s complicated, to say the least.” 

The past couple of months have been hard on her siblings, the fear of the unknown weighing heavily on them. And Melissa feels it. 

She said, “I just wish I could protect them everything – physically and emotionally. It’s just a difficult time.” 

Jessica & Friends, other group homes struggling during pandemic

Peter Teague, founder and executive director of Jessica & Friends Community, says that Jessica and Friends and other organizations that care for people with intellectual disabilities are struggling to stay afloat financially during the COVID-19 pandemic.

In a guest column, he noted that the “pandemic has put providers who serve people with disabilities in a precarious position throughout the entire commonwealth. Already, under the best of circumstances before COVID-19, people with disabilities have been marginalized and our employees overworked and undercompensated.

“The low rates that we receive from the state have not been sustainable for many years, and now the increase in the COVID-19 costs are pushing many organizations towards a breaking point."

Teague called on the governor and state lawmakers to increase funding for groups that provide services for people intellectual disabilities.

Columnist/reporter Mike Argento has been a Daily Record staffer since 1982. Reach him at 717-771-2046 or at mike@ydr.com.

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