Diane Franklin plays board games with her grandchildren. (Photo courtesy the Franklin family)

More than four years later, Diane Franklin’s children still choke up when they describe what happened to their mother.

It was Dec. 13, 2015, and as she approached Franklin’s apartment in a Charlottesville independent living community, Jackie Carney could already smell urine.

Franklin had been trapped there for four days, her broken clavicle preventing her from reaching a phone and calling for help until her daughter finally found her, soaked in urine and laying in feces.

Their mother’s traumatic experience shook the whole family. It led to a lawsuit, advocacy for increased oversight of independent living communities, and a state report on the industry released earlier this year that outlines concerns about lax accountability.

The facility where Franklin lived at the time, Commonwealth Senior Living at Charlottesville, promised daily check-ins. That was appealing to her three children, because though their mother was capable of living on her own, they wanted the assurance that someone would check on her every day, just in case.

Over those four days, 74-year-old Franklin waited in vain for someone to find her, lying in bed, stranded because the broken clavicle worsened her already limited mobility as a result of multiple sclerosis. She managed to get her leg over the edge of the bed, hoping to crawl to the phone. But she had strength neither to get the rest of her body over nor to lift her leg back up.

Each day, the scheduled check-in time came and went, and nobody found her.

In a statement, a Commonwealth Senior Living spokesman said the company is “extremely sorry for what occurred,” and that it “took immediate action to resolve” the gaps in the resident check-in procedure after the incident.

Franklin’s experience led her children to champion an effort to bring awareness to the deficits they see with independent living communities: lack of accountability, protection and a unified voice to represent the residents’ needs.

Diane Franklin with her daughter, Jackie, as a child. (Photo courtesy of the Franklin family)

They met with Franklin’s representatives, Del. Rob Bell, R-Albermarle, and Sen. Creigh Deeds, D-Bath, who proposed a resolution in 2018 that ordered the Department of Social Services to study independent living communities to better understand if the state should begin regulating them.

“It’s staggering to think what our mother had to go through for four days simply because the organization failed to live up to its contractual responsibilities,” said Franklin’s son, Al Franklin.

The report describes an independent living industry steeped in confusion for consumers, in which even the definition of “independent living” is unclear.

DSS found that some residents remain in independent living even though they need more care than these communities can provide because a nursing home or assisted living facility is financially out of reach. Some communities have very sound procedures for protocols like daily check-ins or access to emergency services, while others are vague, with poor follow through. And there is no method for documenting complaints or problems with independent living.

Diane Franklin’s children agree that “fiercely independent” is the best term to describe their mother. But she was stripped of her independence in a community meant to uphold it.

Soon after the incident, she developed cancer. Her children believe what she endured over those four days robbed her of the strength to undergo treatment and she died the following year.

Lack of oversight

The Virginia Department of Social Services regulates assisted living. That means the facilities that come under that designation have a slew of policies they must adhere to and residents have a clear path they can follow to file a complaint, with an assurance that an investigator will look into it. They have all their meals taken care of and are assisted with activities of daily living, such as dressing, bathing or moving from a bed to a wheelchair.

But none of that applies to independent living communities. They lack any oversight from either the federal or state governments, and if Virginia does decide to implement direct oversight, it would be the first state to do so.

The communities themselves run the gamut in their size, style and rules. They generally offer a few services like meals, housekeeping or transportation to residents who are 55 and older, but not medical or nursing care. And many offer safety services, like daily check-ins or emergency call systems, but not all. Some can simply be apartments dedicated to a certain age group.

But all the variations aren’t always clear in marketing brochures, and consumers can become easily confused, DSS found.

Without state or federal oversight, there is no official data on how often complaints arise in independent living. Problems can easily getswept under the rug privately, said Doris Gelbman, an elder law attorney in Charlottesville, in part because the  contracts residents are required to sign almost always contain arbitration clauses.

“I don’t think I’ve ever seen one that doesn’t have an arbitration clause,” Gelbman said. “When they arbitrate, the settlement agreement always has a gag order in it, so when something goes wrong and some kind of settlement is finally reached, no one can talk about it. So it happens over and over and over again because it doesn’t come up in the press.”

At the end of the arbitration process between Franklin’s family and Commonwealth Senior Living, Franklin was awarded $900,000. The family refused settlement agreements that included confidentiality requirements, because they promised their mother they wouldn’t be quiet about what happened, Carney said.

Franklin’s children acknowledged that many may not have the ability to speak out as they have. Some residents might not have children able or willing to do so in the first place.

“We have the financial means and wherewithal, as well as the time, to be able to move this cause forward,” Al Franklin said. “Most people in our positions do not have the financial independence that we do, and most people would have been backed into a corner — a corner created by legal fees, by time, by the desire to just put it behind them and be done with it.”

In need of more care

Despite what the term “independent living” suggests, residents do not have to be physically independent to reside in those communities. Rather, they must be able to manage their care on their own without relying on community staff.

According to the report, DSS staff “found an overwhelming number of frail, neglected seniors who remain in independent living apartments because they cannot afford the higher price tag of assisted living.”

The average cost of independent living is $2,155 a month in Virginia, according to DSS. The average assisted living rate is more than twice that at $4,508 a month.

That problem points to a deeper issue within Virginia’s long-term care landscape: Assisted living is prohibitively expensive for many people. But the one safety net that the state has, the auxiliary grant program, offers a pittance of a reimbursement, deterring most operators from accepting it.

If it were increased, said Judy Hackler, executive director of the Virginia Assisted Living Association, many more facilities would participate.

“But at the current rate, they would be constantly in a negative balance for those residents,” she said.

The auxiliary grant program only pays $1,271 per month, though that is increased by about $200 for Northern Virginia. That amount is less than a third of the average cost of staying in an assisted living home in Virginia, according to Genworth’s cost of care calculator.

The report does point out that, if Virginia were to increase the rate, “this change would enable more seniors to attain the level of care and supervision they need.”

Jennifer Inker, a professor with the Virginia Commonwealth University Department of Gerontology who has managed both independent and assisted living facilities, described the regulations and oversight surrounding assisted living as almost comforting for an administrator.

It was structured and provided protection, because she knew what residents she could care for, and she had documentation of their level of need to ensure they moved on to an even higher level of care, a nursing home, if they needed to.

“Independent living had none of that,” she said. “We need to be asking ourselves: Could any of these decisions about who can live here and what kind of support they need to live here, could they have life or death consequences? If they could, then I think we need to really be clear with ourselves that, therefore, we need to have a way to protect consumers and operators.”

Residents are voiceless

Diane Franklin’s children couldn’t turn to the Department of Social Services after their mother’s experience. Though Commonwealth Senior Living had an assisted living facility on the same campus, her apartment was on the independent living community side, and DSS had no jurisdiction, they were told.

That’s a big reason they want more oversight. Families should have someone to turn to, and the businesses should be held accountable when a service they promise their residents, such as the daily check-ins, fail.

“That’s something my mom felt, and some of the other residents felt: That they were afraid to speak up for fear that if they went to somebody at the facility, they’d be treated differently for having a voice and being willing to speak up,” Carney, Diane Franklin’s daughter, said.

The state has a long-term care ombudsman program, operated by the Department for Aging and Rehabilitative Services, that supports residents in assisted living or nursing homes, helping them resolve conflicts and problems.

And, though the program accepts calls from residents in independent living, those facilities are not required to make residents aware of the program, explained Joani Latimer, the state’s long-term care ombudsman.

The program has only about 30 statewide staff members, and just half of those work full time. They’re stretched thin, Latimer said. If Virginia wanted to expand the program to explicitly include independent living, it would need to provide more funding and resources.

“This is a consumer-driven industry, and that’s perfectly fine, but the consumer still needs to have some measure of protection, or some place to turn to if things don’t go as expected,” Inker said.

Is it time to regulate?

Hackler, with the Virginia Assisted Living Association, said she thinks the DSS report is a good first step, but she hopes the state continues to research the industry before it leaps into regulations.

“I think there still needs to be some more fine-tuning of the definitions,” said Hackler, whose organization also works with businesses that offer both assisted and independent living. “You also don’t want to create regulations based on one negative occurrence, either. Sometimes you want to look at the whole broad spectrum.”

Diane Franklin (Photo courtesy the Franklin family)

She added that, if regulations were to be implemented, she’d hope they would be paced to ensure that residents retain their independence. Not all residents would want a daily check-in procedure, for example.

Inker said she thinks a lighter regulatory touch could be more effective, such as requiring the communities to have written procedures and maintain daily logs if they have a check-in system, or providing a disclosure statement with information about accommodations and services.

“One of the huge benefits of independent living is its flexibility,” she said. “I can move into independent living, and I can bring in the care that I need, and I just hopefully stay there until the end of my life, and that’s a really worthy goal for both the resident and the provider — but that’s only going to work if there’s clarity.”

“She didn’t want to be alone”

The fiercely independent mother that Diane Franklin’s children grew up with couldn’t be left alone after her experience in an independent living community.

When he lived near his mother in Charlottesville before moving to Milwaukee, Chris Franklin said he would visit her when she had a list of things for him to do, like change light bulbs.

“She was always smiling, always happy,” he recalled. “She always had a glint in her eye.

“But after this, when mom was out of the hospital and moved into a skilled nursing facility, where she lived for the rest of her days, we made sure she was never alone. She didn’t want to be alone,” he continued. “For the first time in my life, I had seen my mom just be afraid. And she had lived alone for a number of years.”

“Insisted upon it,” Carney added.

Yet when Chris Franklin went to visit his mother after her experience at the independent living community, there wasn’t a lot of talking.

“She had a well-lived life, and to see that just pissed away because of someone’s negligence …” he trailed off. “They basically robbed us of those last few months with our mom. And that makes me angry. It really does.”