Texans in state homes still don’t have visitors. Their parents worry they don’t know why

Stephanie Kirby saw her son Petre just three times in the past six months — visits that were possible only because he was in the hospital. Two of the hospital visits stemmed from Petre Kirby self-harming; the other was for a scheduled appointment.

Outside of those painful and brief visits, Stephanie Kirby is otherwise unable to hug, comfort or see in person her 28-year-old son, who has an intellectual disability and functions at the level of a 3-year-old. Petre Kirby has depression and post-traumatic stress disorder stemming from abuse and neglect he suffered before Stephanie Kirby adopted him when he was 6. He lives at the Denton State Supported Living Center, where visitation has been restricted since March because of COVID-19.

“I can understand COVID. I can understand what happened,” said Stephanie Kirby, who lives in Celina and acknowledges that safety precautions must be taken. But for her son, she worries “there’s no way he could ever understand why his mom just never came back.”

Most recently, her son went to the emergency room because he badly cut his finger. When it was time for him to leave, he had a meltdown, kicking and screaming, causing his wound to reopen.

Stephanie Kirby says she doesn’t blame the facility — which she believes is taking good care of her son — but she worries that the state’s restrictions on visitors could have deleterious emotional impacts on the vulnerable residents of the state supported living centers. It also leaves families on the outside desperate for closer contact: Stephanie Kirby could better monitor how the injury is healing if she could see her son in person.

“They may as well say, ‘Stephanie, you’ll never see your son again,’” she said.

Across Texas, families with loved ones in state supported living centers are desperate for in-person visits after months have ticked by with coronavirus restrictions in place. The facilities closed to visitors in mid-March to prevent the disease from tearing through the centers, which together house some 3,000 people with intellectual and developmental disabilities. Last month, state officials said some visitation could resume at nursing homes and other long-term care facilities, but only under stringent conditions that include having no confirmed cases, and sometimes regular testing of staff and the use of a plexiglass separator during indoor visits.

A spokesperson for the Health and Human Services Commission, Kelli Weldon, said none of the state’s 13 state supported living centers had applied for visitation as of Sept. 3.

State officials say the precautions are needed to protect center residents — some of whom are medically fragile and might not understand safety guidelines like social distancing and frequent hand-washing.

“Due to COVID-19, we are following state and federal guidance limiting visitors to each SSLC to protect the health and safety of the people in these facilities, and we have worked to accommodate virtual visits and have received positive feedback from many families on those,” Weldon said in an email.

But parents and advocates say residents with intellectual disabilities can’t understand why family members aren’t visiting, and they are struggling to replicate in-person interactions through video conferences or phone calls. Some worry they can’t be there to provide oversight of their children or advice about their care.

The restrictions were understood at the beginning, but parents have grown frustrated as months — and milestones — have passed, Rich said.

At the state supported living centers, people live in dorm-style housing and receive around-the-clock care from some 11,600 employees who provide medical services and help with intimate tasks like bathing and dressing. The majority of residents have lived in the centers for more than 10 years, and 144 residents are under age 22, according to a 2020 report from the facilities’ ombudsman.

Weldon, with the health commission, said “facilities are not required to allow limited personal visitation, and we encourage residents and responsible parties to talk to their facility if they have questions about its visitation policies.”

She also said that “multiple factors are considered, including the status of active cases within long-term care facilities, the trend associated with active cases, the level of recovery in facilities, and the level of community spread.”

As of Monday, there were 62 active coronavirus cases among residents, and 168 in staff. More than 1,000 employees had been cleared to return to work after testing positive and recovering, and an estimated 504 residents have recovered. A dozen have died, according to state data.

As infections began to increase in Texas — with an early outbreak at a state supported living center in Denton — people close to the state facilities warned they lacked access to adequate testing and other resources to respond. Family members on the outside complained they were in the dark about the safety risks their loved ones faced. The state later required all residents and staff members to be screened for the virus, and the health commission, which oversees state supported living centers, began releasing information this summer about where outbreaks were occurring.

George Bithos, the independent ombudsman for the living centers, has heard dozens of concerns voiced by families of those in the centers, and has passed the reports on to Gov. Greg Abbott’s office. Officials are listening, and the guidelines for visitation aren’t “set in concrete,” he said — but there is currently a “blanket rule” that is “extremely difficult” for centers to meet. Abbott’s office did not respond to a request for comment.

The state has promoted virtual visits and set up a pen pal program for patients and residents of state hospitals and state supported living centers.

But advocates and parents say video often doesn’t work with residents of the state supported living centers.

Greg Hansch, executive director of the Texas branch of the National Alliance on Mental Illness, said he immediately worried that COVID-19 restrictions could harm people in facilities like group homes and state hospitals — populations that “often count on relationships with their family members as being a critical layer of support.”

Loneliness and isolation — which already affect people with disabilities disproportionately, Hansch said — could trigger behavioral changes like withdrawal and loss of a daily routine, or more severe consequences, like increased susceptibility to depression, anxiety or suicide, he said.

“The power of touch — hugs and squeezing a person’s hand — those can make an incredible difference,” Hansch said. “But that may not be possible at this point in time.”

Mary Nichols, who started the advocacy group Texas Caregivers for Compromise, said the health commission has taken a clinical approach and should be more “humanitarian.”

The group has started putting up more than 300 signs across the state with the names of family members in long-term care — “each one bearing the name of a loved one either still living in isolation or who lost his or her one and only precious life while living in isolation,” according to a press release.

Nichols said the group has asked Texas legislators, HHSC and Abbott to consider an “essential caregiver plan” which allows one person who was a caregiver before the lockdown to visit. The caregivers would follow specific safety guidelines, she said.

“We are people who spoon-feed, brush their teeth, clean their dentures, check for bed sores, wash their hands, find their missing shoes, replace their hearing aid batteries,” Nichols said.