90-Year-Old Woman Kills Herself Rather Than Go Through Another Lockdown

Canada’s parliament is currently debating Bill C-7, a bill to expand (MAiD) euthanasia in Canada to people who are not dying.

Even though Bill C-7 is not yet passed,  CTV News Medical Correspondent, Avis Favaro, reported that Nancy Russell, a 90-year-old long-term care resident, who was not chronically ill or dying, died last month by euthanasia (MAiD) to avoid living through another COVID-19 lock-down.

Favaro reports:

Across Canada, long-term care homes and retirement homes are seeing rising cases of COVID-19 and deaths yet again, a worrisome trend that is leading to more restrictions for the residents.

But these lockdowns are taking another toll among those who don’t get COVID-19.

Residents eat meals in their rooms, have activities and social gatherings cancelled, family visits curtailed or eliminated. Sometimes they are in isolation in their small rooms for days. These measures, aimed at saving lives, can sometimes be detrimental enough to the overall health of residents that they find themselves looking into other options.

Russell, described by her family as exceptionally social and spry, was one such person. Her family says she chose a medically-assisted death (MAID) after she declined so sharply during lockdown that she didn’t want to go through more isolation this winter.

Russell, who was a supporter of euthanasia, when first requesting “MAiD” was turned down. The doctor told her that she had “too much to live for.” But she was then approved after her second request. The report stated:

By the time she applied a second time, “more concrete medical health” issues had developed, her daughter said.

This time, doctors approved her. Russell would not have to go through another lockdown in her care home.

“She just truly did not believe that she wanted to try another one of those two-week confinements into her room,” her daughter said.

Doctor shopping is a clear concern with Canada’s euthanasia law. Russell was probably sent, the second time, to a doctor who provides euthanasia. Canada’s euthanasia law is based on subjective rules.
In August 2020, Rob Munro reported a similar story for the Kelowna Infonews. Shirley Turton (78), asked her family to arrange a “MAiD” death because she felt “locked into a long term care prison” due to COVID-19.

Munro reported that the daughter of Shirley Turton said that her mother is not terminally ill but she had become:

depressed, not interested in eating and can’t even put a glass of water to her lips but, most of all she is lonely.

Turton didn’t die by euthanasia, but it is impossible to know how many Canadians have died by euthanasia based on the COVID-19 lock-down.For instance, the Ontario data does not indicate how many MAiD deaths are based on similar reasons to Nancy Russell’s death but recent Ontario MAiD statistics indicate that the number of euthanasia deaths is increasing.

From June 17, 2016 to October 31, 2020, there were 6266 reported assisted deaths in Ontario. There have been 1948 reported assisted deaths in 2020 representing 1127 in the first six months of 2020 and 821 in the last four months (now averaging more than 200 assisted deaths per month) in Ontario.

Canada’s MAiD law permits euthanasia for people who are physically or psychologically suffering that is considered intolerable to the person and that cannot be relieved in a way that the person considers acceptable.

 

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90-Year-Old Woman Kills Herself Rather Than Go Through Another Lockdown

Nursing home facility opens 'hug booth' for families who haven't seen residents since lockdown

One nursing home in Freeburg, Illinois is getting creative to make sure residents finally feel their loved one's embrace.

FREEBURG, Ill. (KMOV.com) -- Because of the pandemic, it has been months since some people have seen their loved ones in nursing homes, and many residents may long for something as simple as a hug from a family member.

One nursing home in Freeburg, Illinois is getting creative to make sure residents finally feel their loved one's embrace.

Freeburg Care Center has been on lockdown because of the pandemic since March, and resident Leonna Parrish hadn’t seen her family since then.

Friday, that changed when the facility instituted a “hug booth.”

“We wanted to be able to do something for our residents to be able to be give them all that touch feeling they've been longing for,” said Dana Miller, marketing and admissions director for Freeburg Care Center.

Residents wore isolation gowns, and family members wore gloves past their elbows.

Everyone wore masks.

“We also sanitize the plastic cover between the family members and the residents between each visit,” Miller said.

So when Leonna got to hug her granddaughter-in-law after so many months alone, the emotions were flowing.

“I thought I'd probably cry during it but it's wonderful to be able to have her have that and myself have that physical touch with her,” said Jodie Parrish.

“There was not a dry eye in the house,” Miller added.

Freeburg will host another hug booth Saturday in order to give residents another opportunity to touch their families before it becomes too cold outside.

Freeburg hasn’t had any COVID-19 cases during this pandemic, something they attribute to the safety measures they've taken, which gave them the confidence that they could do the hug booth safely.

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Nursing home facility opens 'hug booth' for families who haven't seen residents since lockdown

‘We can’t help her:’ Families of residents forced to leave Norwich nursing home in wake of coronavirus outbreak frustrated, worried

By Dave Altimari

 

Karen Kingston stands on her front porch for a portrait at her home Friday, Sept. 18, 2020, in Old Lyme. Kingston's 98-year-old mother lives at Three Rivers Healthcare nursing home in Norwich, which the state Department of Public Health moved to close this past Wednesday, Sept. 16, 2020, after several residents have died from COVID-19 and over two dozen others became infected with the virus. Kingston, whose mother tested negative for the virus, said all the residents have to be moved out in two weeks. (Kassi Jackson/The Hartford Courant)

The moment she learned about the first COVID-19 case in the Norwich nursing home where her mother lives, Karen Montanaro Kingston had been frantically trying to get the 98-year-old out of there.

But word of the outbreak at the Three Rivers Healthcare Center got out. Other homes shied away, she said, saying her mother was a “high risk” patient — even as Three Rivers staff assured her that her mother, Irene Montanaro, didn’t have the coronavirus.

Karen Kingston's mother, Irene Montanaro is 98 years old and lives at Three Rivers Healthcare in Norwich, Conn. She has tested negative for COVID-19. (Provided by Karen Kingston)

Kingston watched as the situation at Three Rivers worsened, an outbreak that would infect more than two dozen patients and staff and claim at least four lives. Montanaro’s former roommate at the facility died on Sept. 10 as the number of cases kept climbing.

“We would get these robocalls every Tuesday or Thursday and one time it said there were 10 new cases and that’s when I knew it was out of control and we needed to get her out of there,” Kingston said.

Now, with the state taking the dramatic step of ordering all patients out of the nursing home, Kingston and the family members of the other residents at Three Rivers are dealing with another disruption. The evacuation is the latest blow to families who had little contact with their loved ones because of the coronavirus lockdown and dealt with ongoing reports about the outbreak spreading and residents' dying. Now, their loved ones are being abruptly uprooted.

“We are kind of in limbo right now and don’t know what’s going to happen,” Kingston said. “Who is going to move my 98-year-old mother? We can’t go in there and help her pack. We can’t help her settle into a new place. She is going to have to go through this alone at 98-years-old.”

One tragedy after another

The decision to relocate all 53 residents was made quickly by state officials as they came to realize the depth of problems inside the Norwich facility.

Two inspections at the facility identified a range of infection control issues — many preventable errors in areas that received widespread attention as COVID-19 tore through nursing homes across the state, killing upwards of 2,500.

The problems cited by the health department included staff shortages, failure to properly cohort COVID positive and negative residents, having staff work with both COVID positive and negative residents on the same shift and lack of proper PPE. Among the issues that has generated widespread attention is the decision to work by a nurse who had vacationed with family members concerned they might be infected.

Now, in wake of the decision to move the residents out, state officials are scrambling to contact all of the families of residents to assure them their loved ones are OK and to get a sense of where they might want to go next. Some families haven’t been contacted, while other residents don’t have families to contact and are under the care of a conservator.

“We have not heard anything from anyone as to what is happening in there. We are completely in the dark,” Katelynn Gosselin said.

Katelynn Gosselin (left) is pictured with her grandmother Maryjane Jackson who is a resident of Three Rivers Healthcare in Norwich, Conn. (Provided by Katelynn Gosselin)

Gosselins’ 82-year-old grandmother, Maryjane Jackson, has been at Three Rivers since February. Jackson fell at home and was injured. She went to Three Rivers for rehabilitation, but needs 24-hour supervision now.

“I would like to get her out of there and home but that’s not possible,” Gosselin said. “I would hope they will move her somewhere close.”

Some families were told Friday by DPH officials that they plan to have everyone out of Three Rivers within two weeks. They will be moving four or five residents a day, starting with the COVID positive cases. Many of those, officials have said, are going to the Riverside Health and Rehabilitation Center in East Hartford.

Long-term Care Ombudswoman Mairead Painter said her office has been swamped with calls from family members since the announcement. She said the fast moving situation has left everyone with questions and family members worried about their loved ones.

“For some of them this has been their home for years and now they have to move somewhere new,” Painter said. “It’s been one tragedy after another for these families.”

“Mom was OK there”

When the first COVID case was announced in mid-August, Gosselin started a petition seeking to have any residents who were positive transferred out of Three Rivers before the virus spread. About 200 people signed it.

“We thought she was in a safe facility where they would take good care of her — and that didn’t happen,” Gosselin said.

Gosselin said she has no problem with the state moving patients out of Three Rivers.

“I have to say I see it as a good thing that they’re closing it because I don’t think the staff did a very good job of protecting people,” Gosselin said. “The fact a nurse was able to go to work while she was sick and not wear a mask and no one said anything to her is more than enough to close it down.”

Gosselin is referring to the actions of a supervising nurse who worked a double shift on July 24 after going on vacation in Rhode Island. She told several of her fellow employees that she wasn’t feeling well and that at least two members of her family had gotten COVID-19 tests, according to DPH investigators.

Three days later the nurse tested positive as well. Several employees told the DPH that the woman didn’t wear a mask as she worked the double shift.

DPH hasn’t identified the supervising nurse, but the Courant has learned her name is Mary Ciezynski, who was working as a part-time employee at Three Rivers. Among those infected was her mother, a patient at the facility who has since died, though not of COVID.

All told, 21 residents have tested positive as well as six staff and at least four residents have died. The outbreak spread beyond the walls of Three Rivers to nearby Backus Hospital where at least nine employees were infected by a Three Rivers resident who spent several days in the hospital in mid-August.

Norwich, CT - 9/16/20 - The Connecticut Department of Public Health announced Wednesday that Three Rivers Healthcare will be closing after several COVID-19 patient deaths and at least a number of other infections. Photo by Brad Horrigan | bhorrigan@courant.com (Brad Horrigan/The Hartford Courant)

The rapid outbreak was an abrupt turnaround. Up until the late July incident, Three Rivers had been relatively COVID-free with only a handful of cases and no deaths.

“My mom was OK there. It’s an old building but she liked the people taking care of her,” Kingston said.

While she didn’t like that she couldn’t visit her mother all of the time, Kingston was aware of how the virus was impacting other long-term care facilities across the state and knew the sacrifice was necessary.

Since Eastern Connecticut in general had very low case volumes she thought her mother was safe.

“They had done so well for so long but once they got one case it went down fast,” Kingston said.

Infection spread rapidly

The two DPH reports on Three Rivers revealed a litany of problems.

The facility, investigators found, was short-staffed. Eighteen of the 21 shifts that DPH reviewed between August 28-September 3 showed that one nurse worked alone in the A Wing, where patients with suspected COVID-19 were under observation.

Three Rivers also failed to properly test all of its employees as mandated by Gov. Lamont’s executive orders, the state found. A review of testing records showed that of the nursing homes' 55 employees, 16, or 29 percent, had missed weekly testing for COVID 19.

At least three patients were sent to the emergency room at William Backus Hospital without written documentation that the residents had COVID-19. DPH also cited Three Rivers for failing to cohort patients once the virus was detected and for having nurses working with both COVID positive and negative patients on the same shift.

Given the range of problems, the state late last week quietly appointed attorney Katharine Sacks as temporary manager of the facility, taking over all clinical decision-making from the owner, JACC Healthcare Inc.

But Sacks said it took her about 30 hours in the facility to realize that residents needed to be removed and that there was no way she could bring back into compliance by the state’s deadline of Sept. 30.

“I realized the building blocks of compliance weren’t here,” Sacks said, last week. She added she has been appointed a temporary manager of a long-term care facility about 30 times and had “never been in a facility she didn’t think could be brought up to compliance.”

Sacks said there was a severe staff shortage, lack of training for staff and no competent oversight of staff that was there.

In a statement, the nursing home owners, JACC Health Center of Norwich, said that it supported Gifford’s order to move all patients out of the facility. While Gifford’s executive order doesn’t actually close Three Rivers, it is unclear how it would operate without any residents.

“Since the initial COVID outbreak, we have been cooperating with the State Department of Public Health to bring our facility into full compliance with state and federal regulations, including the engagement of a Temporary Manager to oversee the facility,” the statement said. Following an initial assessment, the temporary manager concluded that bringing the facility back into substantial compliance within the timeframe mandated by regulatory bodies was not feasible due to a number of concerns, including the absence of critical staff."

Painter said given the depth of the issue at Three Rivers, she understands why DPH made such an unprecedented decision.

“It all comes down to poor management by a private, for-profit company,” Painter said. “This is opening people’s eyes about what no one sees inside a nursing home.”

The state’s plan is to first move the 17 residents identified as COVID positive and the seven residents under observation to the Riverside Health and Rehabilitation Center in East Hartford which still maintains a COVID-only wing. Riverside has had its own problems with COVID with more deaths than any facility in the state.

The 29 residents who have tested negative, including Irene Montanaro and Maryjane Jackson, will be placed in nursing homes within 15 miles of Norwich, if possible. While state officials have said there is capacity in nearby nursing homes to place Three Rivers residents, Painter believes it will not be easy or quick.

Just because a facility may have beds available doesn’t mean it’s the right fit for someone from Three Rivers. Painter said some people need 24-hour care, certain medications or a facility may not have the staff to handle more residents.

“Many families have been trying to get their loved ones out of there for weeks and can’t because other facilities don’t want people from a ‘high risk’ facility,” Painter said. “The state is going to have to make sure all the residents are tested and assure other facilities they aren’t exposing their residents to COVID.”

Kingston said she is hoping to get her mother moved closer to her Old Lyme home.

“I want to call somewhere and reserve a room but what if they can’t move her right away and we lose our spot?” Kingston said. “A 98-year-old woman shouldn’t have to go through this.”

 

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‘We can’t help her:’ Families of residents forced to leave Norwich nursing home in wake of coronavirus outbreak frustrated, worried

‘It Is Abuse:’ Indiana Caregivers Say Nursing Home Visitation Policies Don’t Put Residents First

By Brock E.W. Turner

Trilogy Health Services did not comment on what happened at its Delphi facility. The company cited privacy concerns. (Brock E.W. Turner, WFIU/WTIU News)

Trilogy Health Services did not comment on what happened at its Delphi facility. The company cited privacy concerns. (Brock E.W. Turner, WFIU/WTIU News)

For months, thousands of residents in Indiana nursing homes have been isolated. What began as an early-pandemic protection is now eroding their quality of life. 

Despite forming an essential and compassionate caregiver program, the Indiana State Department of Health (ISDH) has deferred much of the oversight and management to facilities themselves. Caregivers are caught in the middle and often left powerless.

Vickie Ayres fights back tears as she remembers her mother, Carolyn, who died just last month after a stay in at St. Elizabeth Healthcare Campus in Delphi.

“She loved to travel and eat out and we would take her out several times a week for outings, and when they locked down that was over,” Ayres said. “They wouldn’t even take them out in the facility bus for a drive around or anything. They took everybody and made their worlds that were small, even smaller.” 

Allegations Of Mistreatment At An Indiana Nursing Home

St. Elizabeth Healthcare Campus is owned by one of the Midwest’s largest nursing home operators—Trilogy Health Services. When the pandemic began, Ayres says she considered moving her mother out of the facility and to her home, but she was concerned because there wasn’t an accessible bathroom in her farmhouse. 

“I didn’t feel like I was set-up properly in my home to be able to have her here,” Ayres admits. “Six months later, knowing what I know, do I wish I had done that? Yes.”

Ayres's mother, Carolyn, emjoyed travel, eating out and attending worship services at her church. (Photo Provided)

The place where her mom’s bathroom would have been is still unfinished down the hall from her home office. Contractors have been hard to find, she said.

But Ayres believes caregivers shouldn’t have to make that decision—seeing a loved one or leaving them in a place where extra care can be provided.

The situation quickly spiraled. Ayres says staff at St. Elizabeth Healthcare kept her mom isolated in the facility’s COVID-19 wing for weeks—even after she tested negative. 

The company—which is one of the largest nursing home operators in the Midwest declined an interview, and refused comment on the facility’s polices in a provided statement.

“Out of respect for the privacy of our residents and their families, we cannot comment on specific details regarding those in our care,” the company wrote.

According to Ayres, it gets worse, she says her mother and other residents went months without receiving proper showers.  She alleges staff restricted visits—even window visits—from her and other caregivers because “they were too dangerous.”

St. Elizabeth Health Campus 10-1-2020 Statement by Indiana Public Media News on Scribd

 

Ayres says she made the decision to move her mom due to the lack of visitation and her declining health.  She would eventually test positive for COVID-19 leading Ayres believe her initial test was a false positive. 

The facility’s owner, Trilogy, wrote it will, “continue to work closely with the ISDH, pursue transparency, provide quality care, and put our residents and their families first, just as we always have.”

Carolyn died on August 26 at the age of 81 due to complications of COVID-19.

Guidence Shifts Power To Facilities Instead Of Caregivers

Andrea Smothers is the ombudsman who serves the area, she says nursing homes across Indiana have been forced to interpret vague guidance and that’s leading to significant visitation variation. 

“The guidance that they were given pretty much from our perspective as advocates gave a lot of control to those facilities on how or when, or under what circumstances they would allow visitors,” she said.

That visitation guidance from the Indiana State Department of Health (ISDH) was updated to reflect the latest federal recommendations from the Centers for Medicare & Medicaid Services.  It outlines clearer procedures, but sets a high bar for indoor visitation.

For example, a facility is not recommended to resume visitation unless it has had no new cases for 14 days, its county positivity rate remains low, and residents are notified.

Yet, multiple ombudsmen—who serve as advocates for caregivers and their loved ones—say facilities are doing a poor job communicating these visitation policies and updating caregivers on changes. 

Those changes and that lack of communication, I think build the distrust by the caregivers,” she said.

However, a state program designed to increase access to facilities is plagued with problems of its own.

The bus at St. Elizabeth Healthcare Campus was parked earlier this week. Caregivers and advocates say the facility has denied window vistation. (Brock E.W. Turner, WFIU/WTIU News)

 Instead of creating uniform visitation protocols, Indiana’s essential and compassionate caregiver program has produced a patchwork of guidance that experts and caregivers say is poorly communicated, while also giving facilities too much discretion.

The department declined an interview, but provided a statement saying, in part, “Recognizing the importance of this [essential caregiver] role, we have encouraged this in facilities.”

 Experts say the difference between “encouraging” and requiring is important. Under the current language, ISDH effectively lacks enforcement or oversight.

“Applications are not required to be submitted to the state Department of Health, so we do not have any data on the number of applications accepted or denied,” the department wrote.

During the state’s weekly COVID-19 briefing, Dr. Lindsay Weaver, Chief Medical Officer for ISDH, said caregivers can still file a complaint with ISDH if they feel a facility has wrongly denied their application or isn’t meeting visitation requirements.

“Our infection preventionists work very closely with the long-term care associations we have biweekly phone calls work with them to really work through what does visitation look like and how we can do it safety,” she said the department works with facilities and trade groups to determine what is feasible.

“Of course, we always take family complaints or concerns and we’ll follow up on those,” Weaver said.

However, that process also favors facilities according Smothers.

“When I filed complaints on behalf of residents and their families who couldn’t get in, as an essential family caregiver, I got a very length, nice email from the surveyor saying, well, it’s up the facility, and there’s nothing more I can do.”

Misaligned Priorities

Families with loved ones in long-term care facilities know their time is limited. They’re tired how it is, and many don’t have the resources or time to file complaints with facilities or the state.

Nearly everyone interviewed, agrees tightening visitation at the beginning of the pandemic was the right decision, but few see the rationality six months later.

“What we’re doing is wrong,” Ayres said. “And it’s wrong to an extent that I don’t think many people are aware of.”

Smothers agrees.

“How do we justify that?  There may have been no on-on-one interaction that wasn’t supervised,” she said.

Mary Swinford, the Deputy Director of the state’s long-term care ombudsman program understands the initial hesitancy, but believes now is the time to find a solution.

“We do owe it to our seniors, our residents to continue to advocate for them to have these visits. These visits are vital to residents.”

Ayres has a hard time understanding why more people aren’t outraged a policy made out of necessity months ago remains in effect when rapid testing capacity is available for athletes, college students, and other populations.

“It is abuse,” she said. “At this point it is abuse because it is long-term. It isn’t the short-term health crisis solution to the pandemic.”

And that’s why she and others say they’re going to keep advocating for visitation.

“[Facilities and the state] could make it work, and it’s not that they can’t,” she said. “It’s that they won’t.  And that’s wrong,” Ayres said with tears in her eyes. “Even though my journey is over with my mom, I have to speak for those people that are left.”

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‘It Is Abuse:’ Indiana Caregivers Say Nursing Home Visitation Policies Don’t Put Residents First

Mama bear at the gate: Denton resident fears for daughter in lockdown at state living center

By Lucinda Breeding

Angela Biggs

Angela Biggs has a hair-thin line to walk during the pandemic.

She doesn’t want to alienate the staff members who give her 29-year-old daughter, Amber Reynolds, the care she needs at the Denton State Supported Living Center. Amber and Briggs have a lot of love and respect for the staff.

But Biggs isn’t going to stop trying to connect with her daughter in spite of the state lockdown policies that have kept her from seeing her daughter since March 9, when she helped shepherd Amber through medical tests — a process that can frighten and agitate Amber, who has developmental disabilities and a brain injury from birth.

“Amber can’t speak for herself,” Biggs said. “Her yes doesn’t always mean yes, and her no doesn’t mean no. But my yes means yes, and my no means no. And Amber understands that. She takes it very seriously when I say, ‘I will see you soon.’ I can see where I am losing my integrity with Amber. It just breaks my heart. I have always followed through with her.”

The Denton State Supported Living Center is considered an intermediate care facility, and according to data state officials updated on Aug. 26, the local center reports nine active cases of COVID-19 among residents and 16 among staff. Active cases refers to positive tests, and doesn't reflect how many cases include symptoms. Until the facilities staff and residents test negative for 14 consecutive days, visitors are not allowed in the center.

The center is governed by Gov. Greg Abbott’s declaration of emergency in response to COVID-19, which was recently extended for Texans in nursing and long-term care living facilities through Sept. 29, according to an email from the health commission. Now, long-term care centers can have limited indoor and outdoor visits, but only if there are no active cases of COVID among residents, if staff members have tested negative for 14 days, and there are enough staff to facilitate visits in compliance with infection control requirements. For indoor visits, residents and visitors must be separated with a Plexiglass safety barrier.

Biggs is among caregivers demanding a better response for the elderly in nursing and memory care facilities and Texans living in long-term care facilities. Biggs has joined Texas Caregivers for Compromise, a group of advocates that is petitioning the Texas Health and Human Services Commission and the state Legislature to let them visit their loved ones in person. Nichols collated the stories of Texans desperate to visit their loved ones in nursing or long-term care centers.

“Because isolation kills too, that’s part of the name,” Biggs said. “People are dying. They’re dying alone and untouched. It doesn’t make any sense. People can come into the center from the outside — plumbers, electricians. I get it that they have to be able to get onto the campus. But they’re going into the residential units; caregivers can’t. Judges can come in if they determine that it’s essential. But guardians can’t. Amber is my child. I’m her guardian, not the state.”

Through a Facebook page, caregivers and advocates share stories of their loved ones’ progress or decline during the pandemic, and the group founder, Mary Nichols, posts resources, webinars and videos from officials from the commission.

The Denton center was hit hard by the novel coronavirus last March, and Biggs said she went to the center hoping to see her daughter, who suffers from acute psychosis occasionally but thrives on her routine. Before the pandemic, Biggs would see her daughter twice a week, taking her off the campus to shop and get some stimulation.

“She loves going to Twice as Nice and picking out things for her friends,” Biggs said, adding that the local thrift store is a bright spot for her daughter. “She loves picking out things for her sister.”

She took a bright, colorful care package for Amber but didn’t get to see her daughter. It’s been almost six months since she has been able to talk to Amber face to face. On the phone, Amber sometimes sounds confused, and Biggs said she saw a note about her daughter leaving her residence unit and wandering on the campus at night when she was reviewing Amber’s more recent records. Biggs said she sees this as a sign that her daughter is suffering in isolation, and vulnerable to psychosis. All Briggs can offer her daughter are the Scriptures the two love, singing silly songs and “pivoting” to lighthearted tones when Amber sounds distressed.

The family moved Amber to the center in 2014, and Biggs said the staff gives her the care she needs. Biggs said she “shadows and models” for the staff how to best interact with Amber, who gets nervous during medical appointments. Amber has a medical test coming up, Biggs said.

“That means they have to put a mask on her, which she’s not going to do,” Biggs said. “I’m worried that she’s not going to sleep. If she doesn’t sleep, she can go into psychosis. She’s already sleeping on the couch instead of her bed. And if she goes into psychosis, I can’t be there to help her. I can’t be there to model for the staff what she needs.”

Biggs said it’s frustrating for caregivers, who understand both their role and the risks of COVID-19.

“What happened to our rights and the rights of the residents?” Biggs said. “We can’t even come up and go into the office. Judges can. Police can. Medical students can. Why is that everyone under the sun can come in and wear PPE — but we can’t?”

Biggs said Gov. Abbott is “playing God” with the state’s most vulnerable residents.

“Abbott and Health and Human Services, they are the ones who have laid this out. Their hands are on the rudder,” Biggs said. “I’m asking the governor what good parent doesn’t take all precautions to prevent injury and illness for their children? Abbott said earlier during the pandemic, ‘We are Texans. We can do this. We can wash our hands and do the social distancing.’ But we [caregivers] can’t be trusted? We have given our trust over to the state. Amber is my child; she is not the state’s.”

Biggs said caregivers feel abandoned by Abbott and the state, and that the staff and administration at the center are powerless to stoke connections that reinforce the rights of residents.

“Abbott has robbed us of the right and the joy of caring for our parents and our children,” she said. “It’s moral injury. For us, the guardians, it’s a moral injury ... It’s almost six months since I’ve seen my daughter. She’s been wandering the campus at night. What if she gets off of the campus and starts wandering there on the highway? I can’t help her. I’m not allowed. What if she gets off of the campus and gets raped or killed? Never finding her is one of my biggest fears aside from psychosis.

“We deserve so much better. Our loved ones deserve better.”

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Mama bear at the gate: Denton resident fears for daughter in lockdown at state living center

Denton State Supported Living Center families kept apart for two months, counting

By Peggy Heinkel-Wolfe

Stephanie Kirby brings her son Petre an orange slush and a cheeseburger from Sonic on Sunday, even though she hasn’t been allowed to see him for months. She also brings lunch for the staff at the Denton State Supported Living Center.

Stephanie Kirby spent a few hours of her Mother’s Day parked at the Denton State Supported Living Center gate.

It’s been two months since she’s seen her son, Petre.

“I didn’t know what else to do,” Kirby said.

Since March 16, state officials have essentially barred visitors to the center, home to 440 individuals with developmental disabilities. The lockdown came shortly after Denton paramedics transported a resident suspected of having COVID-19 to a hospital and the city sounded the alarm with state officials. Eventually, 54 residents tested positive for the virus. One resident died from the virus last week.

Kirby used to visit Petre several times a week, making the drive from her home in Celina where she also runs her glass business. She would clip his nails and clean his ears. She would give him new shoestrings — his only toy — and take home the old ones to wash. She would bring him food for his freezer and snacks for his cupboard.

Petre Kirby plays with shoestrings,
 his favorite toy. Courtesy photo

Petre is chronically underweight, so she’d always bring him a slush or ice cream shake. She would bring meals for the direct care staff, too. Then she would ask Petre what to bring the next time she came. Tacos? Pizza? Hamburger?

On Mother’s Day, she stopped at Sonic a block away from the center and picked up a cheeseburger, Tater Tots and an orange slush. She handed it off to a staff member to take to Petre.

“I pray he realized it was from his mom,” Kirby said.

Kirby adopted Petre after his birth mother abandoned him when he was 3 years old. She worries Petre may think he has been abandoned again.

Petre, 28, arrived at the center nearly four years ago in an emergency move. At the time, Petre had spiraled down with suspected seizures that undid years of growth and progress.

The seizure-like episodes ended, but the self-injurious behaviors he developed during those episodes did not.

“The year before this happened, we took a vacation at Yellowstone,” Kirby said. “We went to the beach every summer.”

Kirby said she understands why state officials have limited contact inside the center. Not all of the center’s residents are young and strong like Petre. Some of the center’s residents are older or medically fragile. Their families may not want the risk of infection that comes with visitors.

Center spokeswoman Christine Mann said officials understand how important it is for families to be able to communicate. Mann works for the Texas Health and Human Services Commission in Austin, which oversees the operations of the Denton State Supported Living Center and the 12 other centers like it around the state.

“We’ve increased the use of videoconferencing and worked to add phone lines while increasing the frequency of our updates to loved ones, whether by phone, video chat, email or standard mail,” Mann said. “For the holiday, many residents made Mother’s Day cards for their families. We assisted many residents with phone calls or FaceTime to connect them with their families on Mother’s Day.”

In addition, staff members provide up-to-date information to families about residents in their care, Mann said.

“We’re continuing to explore ways we can keep families, guardians and residents in close contact as this situation evolves,” Mann added.

Kirby calls Petre’s direct care staff for updates twice a day. She has tried talking to Petre using FaceTime, a video chatting app.

The first time she called on FaceTime, he was confused by the sound of his mother’s voice. The staff told her that he looked for her in the doorway and in the hallway. The next few times she called, they seemed to connect for a moment. But on the latest call, Petre started screaming and trying to hurt himself, so they hung up.

“He didn’t understand how to look at the phone,” she said.

The upshot is, not everyone can stay connected through video chats, she added.

Her goal has always been to get Petre back home with her in Celina. Sometimes she lingers at the gate, like she did Sunday, on the chance that she’ll see him walking on the grounds.

“I never thought in a million years that two months would go by without seeing him,” she said.

Kirby sees how the center’s 1,400 employees come and go (they are screened for COVID-19 symptoms at the gate). But there’s been no conversation with center officials about how to keep the center’s families together, especially when the residents, like Petre, have tested negative for the virus.

In Kirby’s case, seeing Petre in person also helps fulfill her oversight role as his legal guardian. For example, she has documented injuries he had that otherwise went unreported, she said.

The center also has a 189-acre campus with plenty of space outdoors for families to meet for a picnic or other get-togethers and still maintain a proper distance from others.

“I’m not asking to come into any building,” Kirby said.

What she really is asking, she said, is: “How does one person get the governor to talk about it?”

The governor’s order barring visits to individuals living in state institutions remains in place, Mann said.

Kirby may understand why the two are being kept apart, but Petre doesn’t.

“That’s what keeps me up at night,” she said.

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Denton State Supported Living Center families kept apart for two months, counting