In Lieu Of Guardianship, States Look To Supported Decision-Making
DAMARISCOTTA, Maine — Until last year, Joshua Strong wasn’t in charge of his own life.
Like many other adults with autism, Strong was deemed incapacitated by a judge early in adulthood. Most of his decisions were turned over to a legal guardian — in his case, his father.
If Strong wanted to make a big purchase, he needed permission. If he wanted to alter his medication regimen, he needed his father’s OK. If he wanted to begin a romantic relationship, his dad might have to make a ruling on that, too.
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That all changed on June 6, 2018, when Strong became the first person in Maine to dissolve a guardianship in favor of something called supported decision-making. It allows him to create a team of people who serve as sounding boards, but all decisions — about financial matters, about health care, about relationships — are legally his to make.
Strong’s case helped pave the way for a change in the way the state’s courts will treat people with intellectual disabilities. A sweeping overhaul of Maine’s probate code that was approved by the state legislature this year and took effect Sept. 1 adds supported decision-making as an alternative to consider in lieu of guardianship.
In the 15 months since Strong became his own guardian, he said his day-to-day life looks the same. He lives in the same apartment, holds the same jobs and still receives support services through a local agency, Mobius Inc.
But the 42-year-old has a level of independence he’s never had, one that wouldn’t have been possible a few years ago.
“It doesn’t feel any different,” he said while pacing between the living room and kitchen of his tidy, one-bedroom apartment in Damariscotta. “I still need help with things, but I guess I’m not asking for permission as much.”
Asked whether he understands the significance of him dissolving his guardianship — that it’s a civil rights victory for people with intellectual disabilities — Strong shrugged. He knows he has autism, and he understands some of the challenges that come with that.
He still takes medication to manage anxiety. He has trouble making eye contact. He repeats things and sometimes returns to conversations that ended minutes earlier. When he has thoughts that he can’t vocalize, he writes them on pieces of scrap paper scattered around his apartment.
Nell Brimmer, an attorney with Disability Rights Maine who represented Strong during his petition to dissolve his guardianship, said his case was a big deal. For so long it was presumed that people with intellectual disabilities were not capable of making decisions. Only a generation ago, Strong might have been sent to live at an institution. His own original guardianship agreement, filed in 2002 in Knox County Probate Court, labels him an “incapacitated person.”
But Brimmer said Strong is a perfect example of someone with a disability who can live independently, with a little help.
“As a society, we can do a lot more to empower people like him,” Brimmer said.
Strong’s father, Jim, said he never imagined when his son was growing up that he would have this life — his own apartment, multiple jobs and control of his own checkbook.
“But this is something he really wanted and, you know, it’s gone great,” he said. “I can’t think of any downsides.”
His mother, Jaime Strong, said they never set any limits for their son.
“He’s very proud,” she said. “And I think he should be”
Parents Were Determined
Strong long had a goal of being independent, but it wasn’t always easy.
Jim Strong said when he and Jaime had him evaluated at a young age, professionals told them he needed to be institutionalized. Becca Emmons, executive director of Mobius, said that’s something she still hears from virtually every client — they are told they’ll never succeed on their own.
But the Strongs were determined never to institutionalize their son. Early in school, he was in a separate classroom because he was easily overstimulated, but eventually he joined his peers. His parents got him all the in-home support they could.
They later divorced, and their son split his middle and high school years between Maine and Massachusetts, where his mother lived. He graduated from Amherst Regional High School in 1999 at age 20.
He lived with his mother early in adulthood.
“I was always with him so there was no need for guardianship,” she said, “but I started to get afraid and think, ‘What’s going to happen when I die?'”
His father, who is an attorney, petitioned the court in 2002 for guardianship and conservatorship, when Strong was 25. A guardian has decision-making authority for all aspects of a person’s life unless excluded by other laws. A conservator is appointed to protect and manage the money and property of an incapacitated person.
Strong has received support services going back to his childhood from a variety of agencies, but he’s been with Mobius the longest, more than a decade. Mobius provides a variety of services — employment, residential, case management and behavioral health — to 130 clients, mostly in Lincoln County. When Strong first started there, he required around-the-clock care and sometimes two staff members. But through medication and behavioral health support, his anxiety lessened.
His first step toward independence came in July 2011. Janice Warring, his program manager at Mobius, wrote to the court that Strong had made steady progress, which resulted in a reduction of support.
“He is responsible for paying rent and utilities monthly. All accounts are in his name. His Social Security is sent to DHHS, who in turn send it to him for monthly expense,” Warring wrote. “Strong works up to 20 hours weekly. He manages his funds independently with minimal assistance to balance his bank account. It is the belief of Joshua, his father/guardian James Strong, DHHS, and I that Strong is no longer in need of a conservator relating to financial matters.”
A judge granted the petition in July 2012, which allowed Strong to manage his own finances, but his father remained his legal guardian.
Strong continued to become more independent. In an annual guardianship report filed with the court in September 2014, Jim Strong wrote that his son continued to thrive. He managed his own Supplemental Security Income payments, took his medication without supervision and lived independently with daytime support staff of 30 hours per week.
“Joshua continues to reduce his dependence upon SSI assistance and hopes to become totally independent financially in the foreseeable future,” his father wrote.
A similar report was filed the next year. No reports were filed in 2015 and 2016, because Strong’s situation had not changed. In January 2018, Jim Strong wrote: “He has become self-sufficient to the point that it is anticipated that a motion to terminate guardianship will be filed within the next two months.”
Strong’s service provider, Mobius, had launched a pilot program with Disability Rights Maine about supported decision-making. When Brimmer learned about Strong and that he wanted to dissolve his guardianship, she took his case.
The petition for termination of guardianship was filed in May 2018. It took the judge a month to grant it. The order included a brief note: “Joshua Strong is utilizing supported decision-making and is therefore no longer incapacitated.”
His support staff took him to lunch at Applebee’s to celebrate.
Supported decision-making starts with the decision-maker. He chooses a team of people to help guide him, often a parent or parents, sometimes a caseworker or employer. The decision-maker discusses what sorts of things he might need support with and what he might want to do on his own. Together, they make a formal plan that outlines everyone’s role. Then they sign it.
At least a dozen other states have laws encouraging supported decision-making, including Indiana and Nevada, which, like Maine, enacted laws this year.
Emmons, of Mobius, said supported decision-making has never had the kind of momentum it’s seeing now, but she also knows it may be slow to catch on in Maine.
“Joshua is so engaging and charismatic. It’s easy to get on board with him,” she said. “But how is it going to go for people who can’t self-advocate the way he can?”
Carrie Woodcock of Maine Parent Federation, a federally funded support network for families who have children with disabilities, said parents have been receptive to the idea of supported decision-making, but she recognizes it’s not for everyone.
“Some parents have a little panic or fear about what can happen if they don’t have that protection of a guardianship, often when it comes to medical decisions,” she said.
The probate code change that goes into effect this month doesn’t require anyone to try supported decision-making. It instructs probate courts to consider less-restrictive alternatives — including supported decision-making — before granting guardianship.
Disability Rights Maine, the state’s contracted protection and advocacy agency for people with disabilities, including developmental disabilities and mental illness, has long been looking for alternatives to full guardianship, Brimmer said.
How many Mainers might take advantage of supported decision-making is not clear. The final decisions still rest with probate judges. But hundreds or even thousands of people might be eligible, and Brimmer said judges need to be educated just like everyone else.
The number of adults in Maine who have guardianships is not tracked — those decisions are made through county probate courts. However, as of May, 5,454 people were receiving federal waivers through Medicaid for support services for developmental or intellectual disabilities, and another 1,742 were on a waiting list for services in Maine.
Jackie Farwell, spokeswoman for the Maine Department of Health and Humans Services, said the agency “supports policies that allow adults with intellectual disabilities and autism to live safely in the community with the greatest level of independence possible.”
Elisha Lowe, Strong’s primary support staff member, has been with him for four years. Lowe helps Strong cook and gives him rides to appointments, the grocery store and his jobs. She said he still looks to her for guidance but rarely needs it.
“He does awesome no matter what,” she said.
Last Wednesday he returned to his part-time job as a crossing guard for the Great Salt Bay Community School in Damariscotta.
He retrieved his yellow vest and double-sided stop sign from his locker, then walked outside to the buses.
“How was your summer, Josh?” a bus driver asked.
“Excellent,” he replied before asking about the driver’s family.
“How long have you been doing this now?” he asked.
“Thirteen years,” Strong said.
“Has it been that long?” the driver asked.
Strong has another job at the local IGA grocery store, where he sweeps and takes out the trash for an hour every day, Monday through Friday. He also does janitorial work at Mobius’ offices.
Once a week he attends a community supper at a local church. It’s a free supper, but he said he tries to make a donation when he can. He watches Marvel superhero movies and “Days of Our Lives.” Sometimes he swims at the Boothbay YMCA.
He has a group of friends he’s met through Mobius, and his social calendar is active. Some of his friends are in romantic relationships, but Strong labeled his current status as “playing the field.”
Strong has a great deal of self-awareness about his diagnosis. Whenever he leaves the house, he has a checklist: Check the stove. Make sure the faucet isn’t running. Turn the computer off. He calls it his “OCD.”
During the course of two interviews, Strong often looked to his direct care worker, Lowe, for guidance when asked questions.
“Am I saying things right?” he asked at one point.
“There’s no right or wrong, Joshua,” she said.
He’s continually setting goals for himself. He recently started riding a bicycle, with the goal of riding it to work and appointments. So far, he’s only been in his driveway.
He has friends who drive, but Strong isn’t sure that’s for him. One day maybe.
He knows his limits.
And even though his father is no longer his guardian, Strong said he’s “still in the habit of asking him for approval.”
“Structure is important,” Jim Strong explained. “He still calls every night, and getting that phone call in is an important part of his day.”
He paused for a moment before adding, “Mine too.”
© 2019 Portland Press Herald
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