Stephanie Kirby saw her son Petre just three times in the past six months 鈥� 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.
鈥淚 can understand COVID. I can understand what happened,鈥� said Stephanie Kirby, who lives in Celina and acknowledges that safety precautions must be taken. But for her son, she worries 鈥渢here's no way he could ever understand why his mom just never came back.鈥�
They may as well say, 'Stephanie, you鈥檒l never see your son again.'
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.
Kirby says she doesn鈥檛 blame the facility 鈥� which she believes is taking good care of her son 鈥� but she worries that the state鈥檚 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: Kirby could better monitor how the injury is healing if she could see her son in person.
鈥淭hey may as well say, 鈥楽tephanie, you鈥檒l never see your son again,鈥欌�� 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鈥檚 centers had applied for visitation as of Sept. 3.
State officials say the precautions are needed to protect center residents 鈥� some of whom are medically fragile and might not understand safety guidelines like social distancing and frequent hand-washing.
鈥淒ue 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,鈥� Weldon said in an email.
But parents and advocates say residents with intellectual disabilities can鈥檛 understand why family members aren鈥檛 visiting, and they are struggling to replicate in-person interactions through video conferences or phone calls. Some worry they can鈥檛 be there to provide oversight of their children or advice about their care.
鈥淪ome 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,鈥� 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 鈥渇eel like it鈥檚 a complete shut-off.鈥�
The restrictions were understood at the beginning, but parents have grown frustrated as months 鈥� and milestones 鈥� have passed, Rich said.
鈥溾�極h my goodness, it鈥檚 been a month since I鈥檝e been able to see my child.鈥� 鈥極h my goodness, I missed my child鈥檚 21st birthday,鈥欌�� Rich said. 鈥淎s the state started to reopen, things didn鈥檛 change for them.鈥�
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鈥� ombudsman.
Weldon, with the health commission, said 鈥渇acilities 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.鈥�
She also said that 鈥渕ultiple 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.鈥�
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.
Concerns rise
As infections began to increase in Texas 鈥� with an early outbreak at a state supported living center in Denton 鈥� 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. 鈥檚 office. Officials are listening, and the guidelines for visitation aren鈥檛 鈥渟et in concrete,鈥� he said 鈥� but there is currently a 鈥渂lanket rule鈥� that is 鈥渆xtremely difficult鈥� for centers to meet. Abbott鈥檚 office did not respond to a request for comment.
The state has promoted virtual visits and set up a pen pal for patients and residents of state hospitals and state supported living centers.
But advocates and parents say video often doesn鈥檛 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 when she was 5 years old. Biggs won鈥檛 FaceTime Reynolds because she鈥檚 worried about how her daughter will react when the call ends.
鈥淚'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,鈥� Biggs said. 鈥淚 have to weigh all that out. And that's like walking on eggshells every day.鈥�
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鈥檛 see her daughter again if cases surge again this fall.
鈥淚 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,鈥� 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 鈥� stuffed with workbooks, clothes, takeout from Olive Garden 鈥� that they leave at the guard鈥檚 gate. They haven鈥檛 seen their daughter, who鈥檚 lived there for 15 years, in person for about six months, and they鈥檝e been told visits won鈥檛 resume until there are zero cases. There are currently three.
Abbie Gottlieb said her daughter 鈥� normally sociable, happy and the 鈥渓ast one to leave鈥� dances or parties 鈥� 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.
鈥淲hen am I going to see you? I really miss you,鈥� 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.鈥�
She鈥檚 particularly concerned that her daughter needs dental care and she can鈥檛 examine her teeth over the phone.
Possible repercussions
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 鈥� populations that 鈥渙ften count on relationships with their family members as being a critical layer of support.鈥�
and isolation 鈥� which already affect people with disabilities disproportionately, Hansch said 鈥� 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.
鈥淭he power of touch 鈥� hugs and squeezing a person's hand 鈥� those can make an incredible difference,鈥� Hansch said. 鈥淏ut that may not be possible at this point in time.鈥�
Mary Nichols, who started the advocacy group Texas Caregivers for Compromise, said the health commission has taken a clinical approach and should be more 鈥渉umanitarian.鈥�
The group has started putting up more than 300 signs across the state with the names of family members in long-term care 鈥� 鈥渆ach 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,鈥� according to a press release.
Nichols said the group has asked Texas legislators, HHSC and Abbott to consider an 鈥渆ssential caregiver plan鈥� which allows one person who was a caregiver before the lockdown to visit. The caregivers would follow specific safety guidelines, she said.
鈥淲e 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,鈥� 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鈥檛 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 鈥� meaning he can鈥檛 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鈥檚 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鈥檚 not the same. He鈥檚 missed his father鈥檚 funeral and his birthday party because of the restrictions, Horner said.
鈥淚 tuck him in at night. I pray with him. He helps me cook in the kitchen and do dishes,鈥� Horner said. 鈥淎nd 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.鈥�
For Aimee Burns 鈥� whose 20-year-old son, Andrew, has severe autism 鈥� the situation feels 鈥渃ruel.鈥�
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鈥檇 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鈥檛 keep living at home; she had other children and felt it wasn鈥檛 a safe environment. He鈥檚 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鈥檛 seen their son in-person since March. They鈥檝e been able to video call him, but it never lasts more than a minute or two because he isn鈥檛 very verbal, Burns said. She doesn鈥檛 know if their son understands why they aren鈥檛 visiting, and she said he hasn鈥檛 had a haircut or dental work since the pandemic began.
She can鈥檛 bring herself to drive out to the facility to drop off a package or peer from afar through the windows.
鈥淚t would literally break my heart to be that close to him. 鈥� I can鈥檛 even imagine being that close and them telling me I can鈥檛 go in there,鈥� she said.
鈥淚 understand the government鈥檚 fear of COVID going through the facility, but it already is via the staff that comes and goes,鈥� she said. 鈥淭his 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.鈥�