When state government economic mandates and restrictions hit Texas, citizens organized and fought for their loved ones isolated in nursing homes. In a relatively short amount of time, they’ve made a difference.

Among those most affected from last year’s shutdowns and mandates were residents of long-term care facilities—such as nursing homes and state-assisted living centers—as well as their families outside.

“The COVID–19 crisis and visitation restrictions in long-term care facilities prevented family members from in-person visitations,” said Genny Lutzel of Texas Caregivers for Compromise. “Physicians, dentists, clergy, and ombudsmen were also denied access to residents in facilities[,] creating an opportunity for unchecked neglect and/or abuse.”

The virus was spreading throughout facilities due to staff member transmission to residents, and many of those residents died alone, isolated from their own family members as they drew their last breath.

During the regular session of the 2021 Texas Legislature, a law was passed stating a resident’s designated “essential caregiver” must be allowed visitation, with a few exceptions. In November, Texans will vote on a constitutional amendment that would guarantee the rights to an “essential caregiver” wouldn’t be abridged.

A key citizen organization that helped make this possible was Texas Caregivers for Compromise, which was founded on July 12, 2020. The organization currently has 3,200 members in its Facebook group.

“We have one and only one purpose, and that is to work toward safe and reasonable visitation in long-term care facilities,” Mary Nichols told Texas Scorecard. “I had been prohibited from my mother’s facility since March 13, 2020, and finally got angry enough 95 days later to begin an online petition on June 12.”

Nichols reached out on social media, looking for signatures. That’s how she met Mary Daniel in Florida. Daniel got noticed when she got a job as a dishwasher so she could visit her Alzheimer’s afflicted husband. “She encouraged individual states to start separate advocacy groups,” Nichols said. Texas Caregivers for Compromise was launched three days after Daniel launched her own group. Stephanie Kirby of Plano and Lutzell of Rockwall work with Nichols at TCC.

Mary Barnette of Beaumont was very active with TCC until her mother died tragically last fall. “By the time the September emergency guidelines were put in place, her mother’s health had deteriorated beyond recovery,” Nichols recalled. “She only had two or three in-person visits with her mother before she died.”

TCC pressed on with their mission. “Accomplishing the goal has been an ongoing and full-time effort since July 12,” Nichols said. “It involved a lot of careful planning, fly-by-the-seat-of-our-pants efforts, luck, and prayer.”

Their record is clear, and impressive for such a new organization of citizens. Last year, more than 25,000 Texans signed their petition. TCC also held a rally at the Texas Capitol on August 8, contacted Gov. Abbott and members of the Texas Legislature, and gave these legislators the book they put together called “Saving Them to Death,” which included stories of how these restrictions affected citizens.

By December, the state Department of Health and Human Services brought TCC in to provide input on emergency visitation guidelines, as well as permanent guidelines on the Texas Administrative Code. They also helped push through the “essential caregivers” legislation mentioned earlier.

But TCC also serves those trying to navigate the complex COVID–19 visitation guidelines that are still being enforced. “Our group helps families understand the very complex HHSC and CMS guidelines as well as the CDC guidance, and we provide all the HHSC visitation resources in our group so they do not need to go look in HHS’s massive website,” Nichols explained. “We keep them abreast of not only guidelines but provider letters, Q&A’s, webinars, and any long-term care visitation related resource that will help them be their loved one’s best advocate.”

Our role is advocacy for residents and to help families learn how to advocate when they are met with barriers to visitation.

Nichols explained the resistance encountered from many of these facilities. “We have often been denied the right to make medical decisions, not been notified of injuries, not consulted or told of ER visits, been denied care plan meetings, and the list goes on and on,” she said. “Many facilities simply do not understand the visitation guidelines or misunderstand them. Others are not keeping up and do not even realize when a visitation expansion has been updated or amended until a family member calls their attention to it.”

For those wanting to make a difference on this issue, Nichols offered some advice. “My preacher, who died of complications from COVID-19 this year, used to say that the most important word in the English language is ‘relationships,’” she said. “Nothing happens between people if you don’t have some kind of relationship—personal, professional, medical, political, or any other kind at all. To get there, you must communicate—mail, phone, keyboard, whatever. Communicate and build relationships.”