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Wilma Simmons, a retired nurse from Indianapolis, is a volunteer guardian for two people. In addition to her regular guardianship duties, she meets with Kenneth every week to play his favorite game – spades. (Photo by Drew Daudelin)
When an adult loses the ability to make important legal and medical decisions, courts can appoint a guardian to help manage their life. But in many places around the country, there aren’t enough. And for someone in need, not having a guardian can increase the risk of abuse, neglect, and financial exploitation.
Among the estimated 1.3 million adult guardianship cases across the country, guardians are family members, friends, social workers, and even for-profit businesses.
Wilma Simmons falls into another category – she's a volunteer.
Simmons is a retired nurse from Indianapolis. She takes a weekly trip to a nursing home to check on two people. One of them is Kenneth Simmons (no relation), who suffered a brain injury at an early age and later became partially paralyzed.
He rarely speaks, and spends much of his time sitting in a recliner by the window.
When she pulls a deck of cards out of her purse, he lights up. His favorite game is spades. With the TV blaring nearby, they play on a table by his bed.
Simmons is, in a practical sense, his guardian. She accompanies him to the doctor, keeps track of his medications, and she is his main advocate to the nursing home every day of the week.
“You don’t want other people making the decisions. If there’s a room move, if there’s a bed change, if there’s a wheelchair change,” Simmons says.
She’s one of a few dozen volunteers at a small nonprofit called the Center for At-Risk Elders. The group is the legal guardian for about 150 people. Its staff recruits, trains and manages volunteers to take care of people who have no one else, or the money to afford a professional.
A volunteer guardian costs clients on Medicaid – which account for the majority of those who need one – $35 a month from their social security income.
Tom Gryzbek says the idea started at St. Margaret Mercy hospital in Lake County, Indiana, where he was president about 15 years ago.
“I was finding more and more instances where people were in the hospital, had no one to be able to consent for their placement in a nursing home,” Gryzbek says.
Most states fund a system that offers public guardians to people in need, but Indiana doesn’t. So a lot of the people Gryzbek saw ended up with private guardians, who are paid for the service.
Lake County Judge Diane Kavadias Schneider says there are private guardians who do good work. But she says with few alternatives on the market, exploitation was increasingly common.
“We had one woman in particular, who was a registered nurse, who took over 300 guardianships and then fell off the radar. We didn’t know what happened to her, what happened to her wards," Schneider says. "And that was a problem.”
So Gryzbek and Schneider teamed up, assembled a statewide task force, and a pilot program launched in their county using volunteers to fill gaps in the market. It was considered enough of a success that state lawmakers passed a law allowing other counties to start their own.
The result is called VASIA – Volunteer Advocates for Seniors or Incapacitated Adults. VASIA works to get grants from the Indiana Supreme Court, which helps fund new county-based volunteer guardian programs. There are now about 18 around the state.
But the state grants are small, especially for groups that serve a large urban area. The Center for At-Risk Elders, for example, says state grants account for just 14 percent of their funding. The rest comes from area hospitals.
The program can only spread to a new county if there’s significant local buy-in to the idea.
“And that seems to be where we have issues," Schneider says. "I think we’re gonna have to look to some non-profits, and other agencies locally, to come up with the money.”
Catherine Seal, an attorney in Colorado who’s worked for years on guardianship issues, says the need for more guardians is a "huge problem" across the country.
Seal says many states, even those that fund public guardian programs, don’t support guardianship enough.
“I don’t think the urgency is recognized," Seal says. "We not only don’t have the fiduciaries in place, we don’t have a system in place that’s gonna work.”
Fueling that urgency is what Seal calls an underappreciated fact, that the country is getting older. Baby boomers started turning 65 in 2011. Researchers at Pew Research Center estimate that by 2050, one-in-five Americans will be over that age – that’s higher than the current share in Florida.
Some critics of Indiana’s volunteer program say the job is too complex, and grants too much power, to give to unpaid strangers. While there is some training, mandatory nationwide standards on guardianship don’t exist, and some argue it’s risky to use volunteers in such an unregulated system.
Supporters of the volunteer model, like Tom Gryzbek, say volunteers are especially committed to caring for their clients. Like visiting someone once a week to play their favorite card game, he says small, human touches make a big difference.
“Sometimes they’re the only person at the bedside when the patient dies, holding the patient’s hand. I know on many occasions they’re the only person that is present in a funeral home for the wake service, or the burial at the gravesite," Gryzbek says. "If it wasn’t for them, no one would be there.”
The statistic at the start of this story – 1.3 million guardianship cases – is a rough estimate from researchers. And that’s part of the problem. For decades, court record-keeping on guardianship cases has been dismal in many states.
That's slowly changing in Indiana, thanks to a registry pushed by the same people who started the volunteer program, which has been adopted by about half the counties in the state. But nationally, no one seems to know how big the need for guardians is, just that it’s growing every day.
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