NEW BERN, N.C. — Susan Osborn hasn’t seen her youngest son, Noah, since March 9.

Noah is 17, has autism and other disabilities, is nonverbal and lives in an intermediate care facility in New Bern, across the river from Susan, his father, Arnold Osborn, and the rest of their family. When the coronavirus pandemic hit, long-term care facilities were among the first businesses to close doors to visitors to prevent the spread of the virus.

At first, Susan Osborn said, she understood the need for preventative measures, but now — more than two months later — she misses Noah more and more each day.

The state still hasn’t released a plan for reopening care facilities, and she worries about how long she’ll be without her boy. They’ve already missed his birthday, his father’s birthday and Mother’s Day; Father’s Day will pass before the scheduled end of the state’s Phase Two reopening on June 26.

‘School stopped, mom and dad stopped coming’

During a normal week, Noah would ride a bus to school every day, then his family would pick him up on Saturday and Sunday mornings to spend all day with them. Sometimes he would see his family on Mondays, at aquatic therapy, and Thursdays, when school is out.

On Saturdays, he would go to horse-assisted therapy, where he rode an old, slow horse named Rocket. Afterwards, they’d take him to get his favorite food, French fries, and then to Hobby Lobby, his favorite store, where he likes to hit the wind chimes and have folks compliment him on his “orchestra.”

Osborn described Noah as “full of joy.” She said he loves laughing with, and at, people he sees in stores.

Back at their house, Noah would swim in their above-ground pool and sit in a swing set that he spent much of his youth in. He also rides his golf cart around the family’s three-acre farm with a large chicken coop.

“Sixteen-year-olds get a car usually, so that’s his car,” Osborn said in an interview with The News & Observer.

As night came around, they would make the drive back across the Neuse and Trent rivers, into the small town of River Bend where his care facility is. He lives in a room with three other boys who have disabilities in the RHA Health Services group home, which has more than 100 residents.

Noah always held his parents’ hands as he walked them to the door and went back inside for the night. Osborn said she didn’t know March 9 would be the last time she would do that for more than two months.

“All of a sudden one day, school stopped,” she said. “Mom and Dad stopped coming.”

The state is working on it

Osborn said she’s called the governor’s office and even talked to the CEO of RHA Health Services, Jeanne Duncan. But she said when she asked “what’s your plan going forward?” she hasn’t received any definitive answers, other than the state is working on it.

According to RHA Health Services general counsel Danny Fulmer, the facility’s visitor polices were dictated by Gov. Roy Cooper’s Executive Order No. 141, which says: “Long-term care facilities shall restrict visitation of all visitors and non-essential health care personnel, except for certain compassionate care situations, for example, an end-of-life situation.”

Fulmer said the company is constantly evaluating policies as states begin to open up and ease restrictions on visitation.

In an email correspondence on May 22, DHHS spokesperson Kelly Connor told The News & Observer the state is still working on a plan for group homes.

“We currently have a work group looking at recommendations on easing restrictions in long-term care settings and more guidance will be forthcoming,” Connor wrote.

While there were more than 80 outbreaks at nursing homes across the state listed in DHHS’ report on congregate living outbreaks on May 28, there were only two listed at facilities that house people with intellectual and developmental disabilities and that aren’t senior living centers.

Both are state developmental centers, in Lenoir and Granville counties, that have a total of 12 resident COVID-19 cases. Neither facility has reported a coronavirus-related death.

“Congregate care facilities will likely be experiencing contact restrictions much longer than the rest of us,” said Corye Dunn, director of public policy at Disability Rights NC.

Dunn said the restrictions are understandable for disease-prevention measures because many intermediate care facilities have residents with multiple health issues, placing them at higher risk for COVID-19. But the lack of visitors can create problems like loneliness and opportunities for people to be vulnerable to abuse and neglect.

Dunn added that the pandemic “highlights one of the reasons why congregate care is not inherently safer than community-based care.”

“We should not be relying so heavily as a state on congregate care for people with developmental disabilities,” she said.

According to a 2018 DHHS strategic plan report, nearly two-thirds of state spending on intellectual and developmental disability services was used on facility-based care, compared to just one-third for community or home-based care.

“There is agreement that the current system is too heavily dependent on facility-based treatment and supports,” reads the report.

‘Doesn’t have a voice’

Until the state releases a plan, Osborn said, she and her husband are left feeling powerless.

She said she was told by RHA Health Services that they could pick up Noah and take him home, but he wouldn’t be allowed back while the pandemic visitor policy is still in place. But he needs the services he receives — they brought him there originally because he was getting too big and strong to handle at times — so they can’t just pull him from the facility.

“I just think it’s really sad that we don’t have any answers at all. There are no dates, there’s no ‘in four weeks, in six weeks, in two days,'” she said. “They just keep nudging it, a little bit more and a little bit more. So we just feel like we have no power. And this is our child.”

They have a once- or twice-per-week video call with Noah on an iPad, but she said it’s not nearly the same as being with him and sometimes can make things worse. She said he doesn’t really understand the virus and the pandemic; he just knows that his life has changed, and seeing his parents on a screen just confuses him more.

“It’s not that beneficial for him because it makes him think we’re there, so he tries to get to the parking lot,” Osborn said. “Or he’ll try to get to the pool because we used to come there. So then he’ll get frustrated and try to bang his head on the wall.”

She also said while Noah has had the flu before and is more medically fragile than some, she isn’t as worried about the effect the virus could have on him because of lower death rates among young people.

As of Wednesday, May 27, DHHS has reported only one COVID-19 death from age 0 to 24.

Osborn said she thinks Noah being kept in the facility and not able to see his family is a violation of his rights. And she’s worried that if schools reopen in the near future, Noah and other kids like him won’t be allowed to go to school unless the state has released plans for reopening facilities.

“That’s what I think this whole thing is, a violation of his rights to associate with whoever he wants,” she said. “And he doesn’t have a voice so he can’t say he wants to be with Mom and Dad.”

As she sits in Union Point Park near their home, looking out on the Neuse River with Noah’s service dog Saxby and squeezing Noah’s favorite toy — a green, stuffed frog named Baby Tad with buttons that make it sing — she keeps coming back to worrying about whether he’s happy. She’s concerned that not being able to go to school, which she said he loves, and not being able to see them is hurting him emotionally. She calls it emotional abuse.

“He’s happy there. Well, he was happy there, when he had other options in his life and didn’t have to stay there 24/7,” she said.

“I don’t know if he thinks, ‘Mom and Dad don’t want to see me’ — and that’s the hard part.”

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