The World Congress on Adult Guardianship is a grand-sounding name for a gathering of lawyers, judges, social workers and legal guardians from more than 20 countries who have come to a Marriott near the Reagan National Airport to discuss some lofty goals having to do with human dignity.
I am here to learn the latest thinking on how very vulnerable adults — both elders with dementia and people with severe developmental disabilities — can lead self-directed and authentic lives instead of being sacrificed to well-meaning but heavy-handed government intrusions. Everyone at the conference readily admits that these ideas are a long way from the bleak realities on the ground in most of the places they come from.
But at least they are talking about them. They use phrases like “person-centered guardianship” and “supported decision-making.” They are making an earnest attempt to connect the dots between the murky, hidden and highly bureaucratic world of adult guardianships and the newly accepted broader social agenda of helping dependent people stay in their communities instead of being shuttled off to institutions.
And because this is Washington, D.C., the way talk turns to action is in creating a layer of government to prod society further along. Two years ago, the Department of Health and Human Services came up with something called the Administration for Community Living, putting money and a mouth toward the goal of giving America’s elderly and disabled access to what all of us say we want: the right to decide where and how we live.
Assistant Secretary of Aging Kathy Greenlee, who is administrator for this new federal agency, says it’s the first emergence on such a level in 20 years. The compelling numbers — 35 million people with dementia worldwide, expected to triple by 2050 — have certainly helped to drive the change. But Greenlee believes we have to stop framing that demographic phenomenon as some sort of apocalypse, as in the “silver tsunami.”
“I am on a one-woman campaign to get rid of this language,” she told the audience here. “A tsunami will drown you. Older people are not a threat.”
In a culture that worships youth and abilities, she said, it is time to challenge our assumptions with new questions.
“At 90, what you have more than anything else is your self,” she said. “Can you be yourself in a guardianship? It all starts with knowing more about the lives and the hopes and the goals and the self of that person.”
Supported decision-making is being discussed here as an alternative to the all-or-nothing powers that court-appointed guardians now have to act in the “best interests” of their adult wards. When it comes to people with dementia, Greenlee admitted, this is easier said than done.
“Supported decision-making becomes even more complicated when you try to reduce it to practice,” she said. “We have socially constructed negative images of the very people we want to help. How do we do this well? How do we provide the right support at the right time?”
A day after Greenlee spoke, her deputy made the announcement that the Administration for Community Living had just decided to establish a national center on supported decision-making, and fund pilot projects to see how the concept can work. Sharon Lewis, principal deputy administrator for the agency, said she knew it would be a tall order for existing guardianship programs.
“Our role is not just to protect people,” she said. “Now we are saying, ‘Oh, by the way, everyone has to be served on a person-centered basis, and you have to take into account what they want.’ We’re a long way from that ideal that I describe. But I also think we can get there.”
Kristin Glen, a former New York Supreme Court judge and law school dean and an advocate for guardianship reform, said recognizing the right of an elder with dementia to more autonomy is a “radical concept.” But she pointed out that this kind of mass paradigm shift has happened before.
“Half the people in this room,” she said, would have once had all major decisions made for them because they were considered “too delicate, too childlike, and they needed protection. Everybody understood that. Now we see things very differently. Of course, I’m talking about women.”
Source:
Putting Personal Autonomy Ahead of "Best Interests"
