FAMILIES PRESS FOR NATIONWIDE ‘ESSENTIAL CAREGIVER’ RIGHTS

More than four years after nearly all visitors were barred from US nursing homes amid a spreading pandemic, consumer advocates are pushing to enshrine permanent access for essential caregivers into federal law.

A bill-in-the-making would require skilled nursing facilities in every state to allow each resident to designate one visitor as essential, guaranteeing that person the right to visit during almost any future emergency.

A previous attempt at federalizing essential caregiver rights failed in 2022.

“This [new] bill does not create a new right. This bill preserves a portion of a right that residents are already entitled to,” said Mary Nichols, a founding member of Texas Caregivers for Compromise, citing visitation rights outlined in the 1987 Nursing Home Reform Act. “We want residents to have the right to in-person access in the event we experience another situation where Health and Human Services waives the right to 24/7 visitation.”

Like many states, Texas adopted a statewide essential caregivers law following the COVID lockdown. Starting March 13, 2020, and running through November 12, 2021, visitation was severely limited as nursing homes attempted to limit resident and staff exposure to the coronavirus. The Centers for Medicare & Medicaid Services directed facilities to “restrict visitation of all visitors and non-essential healthcare personnel, except for certain compassionate care situations, such as an end-of-life situation.”

But consumer advocates repeatedly rallied against the exclusion, saying the agency and facilities were too aggressive in keeping visitors out, even in communities that were not facing heightened COVID risk. Later in the public health emergency, CMS encouraged nursing homes to adopt strategies that supported safe visitation, acknowledging that pandemic isolation had led to physical and mental health declines in many residents.

Even after the lockdown ended, providers struggled to balance visitation with infection control requirements, though most embraced visitation again once COVID-19 vaccines became widely available. In one of the few comprehensive reports on early essential caregiver programs, LeadingAge noted that states developing them had to “carefully consider public health recommendations and weigh risks versus benefits.”

On Wednesday, a coalition of caregiver rights and patient advocacy groups from across the country joined a webinar to learn more about how federal legislation might protect visitation in the future.

“While [waiving] the 24/7 visitation right, like other waivers, was meant to be very specific and it was meant to be temporary in response to an immediate danger, it went on for far too long and was far too broadly applied,” Nichols said. “There wasn’t a whole lot of oversight on how that was applied.”

Mixed success at state level

Several states passed essential caregiver bills during the pandemic, while lawmakers in others rejected them. Policymakers have had to walk a fine line between protecting the right to see loved ones and their neighbors’ right to avoid exposure to infection.

Patient advocates said Tuesday that newly crafted draft legislation is being shopped around Congress as likely co-sponsors representing both houses and both main parties work to finalize the text. Speakers on the webinar said they had been working with Sens. Richard Blumenthal (D-CT) and John Cornyn (R-TX) to get the bill introduced this session.

Nichols described the bill as passable, with minimum requirements. States, she said, would be able to make their own essential caregiver rules more generous.

She said some current state laws are too weak, applying only in federally declared emergencies or allowing facilities to decide if a resident is coherent enough to benefit from a visit before allowing one.

“They can deny visits for residents whom they decide may become agitated. That basically gives them the ability to prevent visits to most people with any kind of, advanced form of dementia because we all know how agitated they can become,” Nichols said.

Broad scope proposed

So far, COVID is the only event for which a nationwide visitation stoppage has been imposed, but advocates want the new legislation to support their right to see residents in the event of other events, including a national security event or natural disasters.

The draft does allow nursing homes to seek a seven-day visitation block with permission from state officials; a second period can be added under additional review. The bill also would require HHS to establish an appeals process.

Essential caregivers could not be required to perform tasks in order to visit; companionship visits would be enough to qualify as essential. Those visiting under emergency conditions, however, could be required to follow the same operational procedures as staff, including any infection prevention measures deemed necessary by building leaders.

Language also would allow facilities to remove an essentially caregiver’s access to a patient if he or she repeatedly violates policy.

The bill is supported by several state chapters of Caregivers for Compromise, as well as Gray Panthers NYC and the National Consumer Voice for Quality Long-Term Care. All were represented on the Wednesday webinar.