Texans with developmental disabilities 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.
“Some of these kids have comorbidity with other disorders such as deafness, blindness, intellectual disabilities, and having that glass barrier, they don’t understand it, you can’t explain it,” said Kelle Wood Rich, head of the Central Texas Autism Center, which offers one-on-one and group therapy for children with autism. For residents of state-run facilities or other group homes, parents can “feel like it’s a complete shut-off.”
The restrictions were understood at the beginning, but parents have grown frustrated as months — and milestones — have passed, Rich said.
“‘Oh my goodness, it’s been a month since I’ve been able to see my child.’ ‘Oh my goodness, I missed my child’s 21st birthday,’” Rich said. “As the state started to reopen, things didn’t change for them.”
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.
Take the experience of Angela Biggs, from Mineral Wells, whose 29-year-old daughter, Amber Reynolds, is in the Denton living center because of a brain injury she suffered at birth. Biggs won’t FaceTime Reynolds because she’s worried about how her daughter will react when the call ends.
“I’m concerned about her injuries, about pulling our hair out when I hang up or doing something like that, banging her head on the wall,” Biggs said. “I have to weigh all that out. And that’s like walking on eggshells every day.”
Reynolds now gets quiet or puts the phone down when her mother calls. Biggs worries Reynolds would end up in the emergency room or a state hospital if she left the living center, and worries she won’t see her daughter again if cases surge again this fall.
“I don’t want her to think of her mother … that she did something wrong or I abandoned her because she does have [PTSD] from when she was a child,” Biggs said.
Abbie Gottlieb, in Houston, has a similar concern.
Before the pandemic, Gottlieb and her husband would visit their 33-year-old daughter, Dana Gottlieb, at the Richmond State Supported Living Center every few weeks. Now those visits are replaced with Thursday night FaceTimes, daily calls and care packages — stuffed with workbooks, clothes, takeout from Olive Garden — that they leave at the guard’s gate. They haven’t seen their daughter, who’s lived there for 15 years, in person for about six months, and they’ve been told visits won’t resume until there are zero cases. There are currently three.
Abbie Gottlieb said her daughter — normally sociable, happy and the “last one to leave” dances or parties — has become depressed, eats one meal a day, and has asked her parents when she can get out to get a pair of shoes or ice cream from Marble Slab.
“When am I going to see you? I really miss you,” Gottlieb recalled her daughter saying. “We can’t hug and kiss her or be right next to her. It’s really been hard for all of us.”
She’s particularly concerned that her daughter needs dental care and she can’t examine her teeth over the phone.
Experts and advocates worry center residents may grow isolated and depressed. They say there should be a middle ground that offers them greater access to their loved ones without forgoing health precautions.
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.
Meanwhile, families worry their loved ones are regressing in the living centers. Some feel like their hands are tied, because they know they can’t adequately care for their children at home.
Jay Cannon, a 31-year-old resident of the San Angelo State Supported Living Center, has pervasive developmental disorder and intermittent explosive disorder — meaning he can’t read or write, drive, tie his shoes or cook. His sister Amanda Horner said he can be volatile, breaking furniture, hitting people or setting off fire alarms if he’s upset.
His lifeline was getting to go home with family on the weekends, Horner said. She got him an iPhone when the pandemic began, but it’s not the same. He’s missed his father’s funeral and his birthday party because of the restrictions, Horner said.
“I tuck him in at night. I pray with him. He helps me cook in the kitchen and do dishes,” Horner said. “And he’s just like a little kid who wants to do everything with you. And he has that little kid view of his family. That is the most important thing.”
For Aimee Burns — whose 20-year-old son, Andrew, has severe autism — the situation feels “cruel.”
Her son spent years in intensive and expensive autism therapy, mastering skills like saying certain words and eating food. When he hit his preteen years, however, he regressed. He became aggressive; he’d hurt himself, destroy walls. Burns tried psychiatric facilities and government agencies, like mental health authorities. She scoured the country, looked at every treatment facility she could find. She knew her son couldn’t keep living at home; she had other children and felt it wasn’t a safe environment. He’s now spent seven years at the Brenham and Lufkin state supported living centers, and has been ordered to be there by a court.
Burns and her husband haven’t seen their son in-person since March. They’ve been able to video call him, but it never lasts more than a minute or two because he isn’t very verbal, Burns said. She doesn’t know if their son understands why they aren’t visiting, and she said he hasn’t had a haircut or dental work since the pandemic began.
She can’t bring herself to drive out to the facility to drop off a package or peer from afar through the windows.
“It would literally break my heart to be that close to him. … I can’t even imagine being that close and them telling me I can’t go in there,” she said.
“I understand the government’s fear of COVID going through the facility, but it already is via the staff that comes and goes,” she said. “This virus is not going away, and locking these people away from their loved ones is not the solution. Isolation kills, too. They are basically imprisoning these individuals.”
This story originally appeared in today’s Texas Tribune. Local reporting by Matt Pierce Briscoe in Corpus Christi.
Photo: Ben Torres for The Texas Tribune