Still Locked Out: Tallahassee families still fighting to see loved ones in long term care

Published: Feb. 3, 2022 at 7:36 PM EST
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TALLAHASSEE, Fla. (WCTV) - On January 27, 2022, the Florida Essential Caregiver bill passed its first subcommittee.

Championed by Caregivers for Compromise founder, Mary Daniel, and House Representative Jason Shoaf, HB 987 would make daily, in-person visitation for people, in long-term care facilities, a Florida law.

Currently, state and federal guidelines have lifted visitation restrictions.

But as WCTV’s Abby Walton recently found out, as the bill’s merits are debated, families are still being kept out of facilities mere miles from the state capitol.

They said they’re also growing more frustrated trying to file complaints with the Agency for Healthcare Administration, or AHCA, the state agency charged with making sure these facilities follow rules like visitation.

“They said, ‘We’re going to go on quarantine,’” Lynn Robinson said.

For several weeks in January, Sodalis Tallahassee Memory Care had a sign, posted to their front door that read, “Due to positive cases of Covid-19 in the community, we are not allowing visitors at this time. We are under a 14-day quarantine. Any questions or concerns, please feel free to reach out.”

“They said 10 days. But then, when I went to the facility, they had a big sign on the door that said 14 days. So, I’m like ‘Where did the 14 days come from? What are they following?’ And that’s what frustrates me, and I think other family members, there is a huge disconnect. The message is not getting out,” Robinson said.

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And Robinson, whose husband Lysle is a resident there, is tired of being their teacher.

“I shouldn’t have to be going out and looking at the CDC rules and reading up on what our state rules are. That’s what they should be doing. All the families should have to worry about is going in and visiting their loved ones. That’s it,” Robinson said.

Sitting at her dining room table, Robinson looks at pictures, reminiscing about her partner of almost 50 years.

Lysle has a form of dementia called “Logopenic aphasia” which makes it difficult to talk and understand speech.

Robinson said another lockdown means more time lost.

“That connection is short. And so, whenever you take that time away from me, I’m losing it. Every day, I’m losing a little,” Robinson said.

And she’s lost so much already, placing Lysle in memory care at the start of the pandemic and lockdowns.

“I cannot mentally do another eight months without being able to see him,” she said.

So, Robinson reached out to AHCA.

It’s their job to make sure long-term care facilities follow the rules and help when they’re not.

However, she said the whole process has turned into a nightmare.

“Last week, I literally called every day. Every day. And so, you get to the point where you’re like, you’re just like ‘I’m going to give up,’ because I’m just not getting any answers or any responses. So now, it’s like ‘OK, I’ve got to fight this battle by myself,’” Robinson said.

And she’s not alone.

Scanning the Caregivers for Compromise Facebook page, you’ll see post after post from family members expressing frustration about getting nowhere when contacting AHCA about visitation restrictions.

WCTV reached out to AHCA to learn more about why this is happening.

Our newsroom reached out for three days, via email and phone, asking Secretary Simone Marstiller, who heads the agency, for an on-camera interview.

Late Wednesday night, WCTV heard back from AHCA.

Their statement made no mention of our interview request, but it says the following:

“The Agency recognizes the importance of family visits in long-term care facilities and the positive impact it has on a resident’s health and quality of life. The Agency has worked tirelessly to ensure long-term care providers have the necessary resources to support visitation in a safe environment. The federal Centers for Medicare and Medicaid Services issued guidelines that clearly state that visitation is now allowed for all residents at all times. These recommendations are addressed to nursing homes but are applicable for assisted living facilities and other long-term care facilities as well. The Agency continues to reinforce these requirements to the long-term care industry including in a recent provider alert in preparation for the holiday season. The Agency will not tolerate any providers disregarding these guidelines and will review any concerns to determine if any actions are necessary. Complaints about facility care concerns and/or visitation restrictions should be reported to the Agency’s Complaint and Information Call Center at 1-888-419-3456. Consumers can also report their concerns using our online complaint form at: https://apps.aha.myflorida.com/hcfc/ Filing complaints through these methods allows us to properly intake and track issues occurring across the state.”

“What’s alarming about this case, to me, is the burden that’s being placed on the caregiver continuing this fight in the midst of two years of fighting. It still continues enough to significantly affect their mental health,” Mary Daniel said.

Daniel, the founder of ‘Caregivers for Compromise’ said Robinson’s story is one of many, highlighting the need for an essential caregiver bill in Florida.

“I think the frustrating part is I don’t see it any differently in large corporations as I do in the small mom and pop operations,” Daniel said.

Florida House Representative Jason Shoaf, who authored the bill agrees.

Shoaf sent the following statement to WCTV:

“Some facilities have put in place arbitrary rules to prevent the spread of COVID. And I’m concerned they’re doing more harm than good. Keeping residents of nursing homes locked in a literal jail cell can rob families of time together and accelerate regression. That’s why I filed HB 987. It will prohibit nursing homes from banning all visitors and guarantee every resident can enjoy a daily visit from their loved one. Just because their C-Suite is out of state does not mean they don’t have to follow our laws in Florida. If they’re going to operate and maintain a license here in Florida, they will follow Florida’s laws or pack their bags.”

After we talked with Robinson on Monday, WCTV contacted the executive director of Sodalis Tallahassee Memory Care.

We gave them our contact information to pass along to their corporate office, Sodalis Senior Living, based in Texas.

Twenty minutes later, Robinson sent WCTV an email, coming from the executive director of Sodalis Tallahassee Memory Care.

“Good afternoon, I just wanted to let you know that I received clarification on visitations from the corporate office,” the email said. “We cannot stop visitations for family members when there are COVID cases in the community. My apologies, I have notified all employees of the changes.”

Twenty-four hours later, Robinson made the trip to see Lysle on Tuesday.

She told WCTV the quarantine sign was off the door and she was able to spend valuable time with her husband.

Robinson was adamant to WCTV: the executive director and staff at Sodalis Tallahassee Memory Care are incredible and know they’re just following corporate directives.

We did reach out to Sodalis Senior Living to find out how and where that quarantine rule came from.

WCTV left multiple voicemails and emails over several days, but so far, we have not heard back.

If anyone still has visitation issues or problems getting a hold of AHCA to file a complaint, please contact our Abby Walton at abby.walton@wctv.tv.

On Thursday, Feb. 3, HB 987 passed unanimously out of its second subcommittee, Children, Families and Seniors.

Its next stop is the Health and Human Services Committee.

At this time, a hearing day and time has not been released.

We did reach out to the governor’s office regarding continued visitation restrictions and the ongoing family frustrations with AHCA.

They responded with this statement:

“Gov. DeSantis feels strongly that family connection is important, and that loved ones should be able to visit long-term care facility residents. He has stated publicly that he would support stronger protections in the law to empower residents and families to unite in person. Our office is monitoring legislation related to this and will let you know as soon as we have any updates to share.”

WCTV did follow up with the governor’s office about our questions regarding AHCA, but so far, have not heard back.

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