As the final moments of their date night ticked away, Candace Hanson-Johnson burrowed her face into the chest of her longtime fiancé, Steven Allen, and begged him not to leave. In the six years since they met, the adult couple had yet to spend more than a few hours alone together on a single date. Even trips to the cinema required preapproval, and overnight stays have been out of the question.

“It’s like we’re being held hostage for a crime we didn’t commit,” said Allen, 34, of Apple Valley, who has a cognitive disability caused by fetal exposure to alcohol.

Like 15,000 other vulnerable adults in Minnesota, Allen lives under the supervision of a court-appointed guardian. For decades, these caretakers have been granted broad authority over the money, medical care and even the personal relationships of the “wards” they are assigned to protect. Once appointed, guardians are rarely removed, and even when abuses occur their sweeping powers often go unchallenged by the courts.

Now, a coalition of large Minnesota nonprofits is developing a less-intrusive alternative. With a $1 million federal grant, Volunteers of America of Minnesota and Wisconsin will lead a group of social service agencies in building a way to protect vulnerable adults while respecting their dignity and preserving their rights against overzealous guardians. And instead of relying on overburdened courts, the new system will connect people like Allen with relatives and teams of social workers who have expertise in caring for people with disabilities.

Advocates predict that if the model catches on, hundreds of Minnesotans could regain control over such basic decisions as where to live, whom to date and how to spend their money.

“This has the potential to be a revolutionary approach,” said Anita Raymond, project director at Volunteers of America. “We are seeking to change the culture in Minnesota of defaulting to the use of guardianship.”

Dinner and a little TV

In guardianship documents, Steven Thomas Allen is categorized as “an incapacitated person.” He needs a guardian, the papers say, because he “lacks sufficient understanding or capacity to make or communicate responsible decisions” and has “demonstrated behavioral deficits.” A Dakota County judge granted Allen’s adoptive parents all the powers allowed under Minnesota’s guardianship law, including control over his residence, medical care and personal property.

But Allen doesn’t see himself as “incapacitated” or helpless. He holds a job as a courtesy clerk at the Hy-Vee grocery store in Eagan, where he bags groceries and corrals shopping carts for $10 an hour. He cooks his own meals, can balance his checkbook and arranges transportation to and from work. Apart from needing reminders to take medications and pay bills, Allen insists he is capable of living without court-ordered supervision.

“Anyone who spent a day in my shoes would see that I’m not ‘incapacitated,’ ” he said on a recent afternoon after wrapping up a shift at Hy-Vee.

Yet many of Allen’s basic rights have been stripped away. He wants to move out of the group home in Apple Valley, a residence chosen by his guardians more than a decade ago, and move in to his fiancée’s apartment in Eagan. That request was denied by his guardians without explanation, he says. His social life is also carefully circumscribed: He is allowed only three “outings” from his group home each week, each limited to five-and-a-half hours. His fiancé is not allowed to visit his group home.

On nights out with Hanson-Johnson, Allen keeps a close eye on the clock to make sure he does not go over his allotted social time. On most nights, the couple settles for dinner at home and snuggling on a couch to watch “Law and Order” reruns before Candace’s mother rushes Allen home by his 9 p.m. curfew.

On a recent night, the couple cooked spaghetti and meatballs as they talked excitedly about plans to get tattoos. Allen’s tattoo would say, “Why are you so beautiful?” and Candace’s would respond, “Because you think I am!,” mimicking an exchange they repeat each date night.

“It’s hard to believe that we’ve been together for six years, and the most we’ve been allowed to do is take long naps together,” Allen said.

This summer, Allen took the rare step of contesting his guardianship. With help from a family friend, he sent a letter to the court asking that his guardian be removed and that he be given a hearing to explain. Weeks later, a Dakota County judge denied the request, citing his failure to provide “any medical support.” Allen was never granted a hearing.

“It’s frustrating because this is not a medical issue,” said Tammi Johnson, Candace’s mother. “This is a happiness-of-life issue.”

Allen’s guardian declined to comment for this story.

‘Supported decisions’

Allen is hardly alone in his struggle. Each year, Minnesota courts receive 1,500 to 2,000 petitions for guardianship. Even though a guardian’s role can be restricted based on a person’s specific needs, judges routinely grant them unlimited powers under the law.

Minnesota is one of just three states with a “bill of rights” for wards, but these rights are routinely ignored, disability advocates say. For instance, state law explicitly gives wards the right to associate with people of their choosing, yet overprotective guardians often prevent meetings with people who could challenge their authority, said Lee Ann Erickson, executive director of Arc Southwest, a disability rights group.

“Grown adults are treated like children,” she said.

In many cases, guardians seek unlimited powers even when their wards need help only with limited aspects of their daily lives, such as managing money or taking medications. “There is a lot of overreach,” said Hennepin County Judge Jamie Anderson, a former probate judge. “Often a person is able to live independently but may lose track of bills … and suddenly [a guardian] wants total control.”

The new approach, known as “supported decisionmaking,” would allow more flexibility, advocates say. Instead a single guardian having broad legal authority, a team of social workers and family members would guide a vulnerable adult through important decisions. The goal is to pinpoint areas where a client needs help making decisions, then develop a customized plan. Unlike the court system, they say, the model presumes people are capable decisionmakers.

Guardians would be appointed by courts only as a last resort.

To build this system, Volunteers of America plans to create a center to promote supported decisionmaking for older persons and adults with disabilities. The center would train social workers, attorneys and judges and, through a statewide hot line, is expected to help more than 500 people a year and train hundreds of professionals.

While the concept isn’t new, supported decisionmaking is still largely untested in the United States. Last year, Texas became the first state to recognize supported decisionmaking agreements as legal alternatives to guardians. The most far-reaching reforms took effect in British Columbia, Canada, where people with disabilities can contract with one or more individuals to help with everyday life decisions.

“Guardianship is a forced bludgeon,” said Amanda Vickstrom, executive director of the Minnesota Elder Justice Center in St. Paul, one of the groups spearheading the new effort. “Before we strip away all of a person’s rights, we have a duty to explore less-restrictive alternatives.”

 

Twitter: @chrisserres