ARI SHAPIRO, HOST:
Caring for an adult who has lost the ability to make important legal and medical decisions independently is difficult under the best circumstances. Family members can take over, or a court can appoint a guardian to help manage that individual's life. But in many places there just aren't enough guardians, and not having one increases the risk of abuse and neglect. Drew Daudelin of member station WFYI reports on a model program in Indiana aiming to fix that.
DREW DAUDELIN, BYLINE: There are an estimated 1.3 million adult guardianship cases across the country. Guardians can be family members, friends, social workers, even for-profit businesses. Wilma Simmons falls into another category - volunteer guardian.
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WILMA SIMMONS: Hi, Kenneth. How are you doing? Are you finished eating?
DAUDELIN: Simmons is a retired nurse from Indianapolis. She's on her weekly trip to a nursing home to see Kenneth Simmons - no relation - who suffered a brain injury at an early age and later became partially paralyzed. When she pulls a deck of cards out of her purse, he lights up. His favorite game is spades. Simmons accompanies him to the doctor, keeps track of his medications, and she is his main advocate every day of the week.
SIMMONS: 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.
DAUDELIN: She's one of a few dozen volunteers at the Center for At-Risk Elders. The small nonprofit is the legal guardian for about 150 people. Its staff recruits, trains and manages volunteers. Tom Gryzbek says the idea started at St. Margaret Mercy Hospital in Lake County, Ind., about 15 years ago.
TOM GRYZBEK: 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.
DAUDELIN: Most states fund a system that offer 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.
DIANE KAVADIAS SCHNEIDER: We had one woman in particular who was a registered nurse who took over 300 guardianships, and then she fell off the radar. And that was a problem.
DAUDELIN: 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. Then state lawmakers passed a law allowing other counties to start their own programs.
CATHERINE SEAL: It's a huge problem all across the country.
DAUDELIN: That's Catherine Seal, an attorney in Colorado who's worked for years on guardianship issues. Seal says many states, even those that fund public guardian programs, don't support guardianship enough. And she says there just aren't enough guardians to meet demand.
SEAL: I don't think that the urgency is recognized. We not only don't have the fiduciaries in place, we don't have a system in place that's going to work.
DAUDELIN: Fueling that urgency is the fact that baby boomers started turning 65 in 2011, and by 2050, 1 in 5 Americans will be over 65. 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. Supporters of the volunteer model like Tom Gryzbek say human touches make a big difference.
GRYZBEK: Sometimes you'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. If it wasn't for them, no one would be there.
DAUDELIN: The number I mentioned at the beginning, 1.3 million guardianship cases - that's only a rough estimate. And that's part of the problem. Nobody seems to know how big the need is, just that it's growing every day. For NPR News, I'm Drew Daudelin.
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