By Samantha Hogan

Supported decision-making is a less restrictive alternative to Guardianship for adults with disabilities, but it might not work for all. 

Cindy Thielen, 31, lives independently in Bangor. In 2011, the Hancock County Probate Court appointed her mother as Thielen's guardian — giving her mother legal control of all decisions in her daughter's life. Thielen attended the University of Maine, and in 2015 she asked the court to terminate the guardianship. It took until 2022 to end the guardianship. Photo by Samantha Hogan.

She didn’t drive.

She couldn’t schedule appointments on her own.

She wouldn’t be able to hold a job and was dependent on others to get through the day.

The petition filed in the Hancock County Probate Court by Julie Thielen-Montgomery in 2011 painted a helpless picture of her daughter, Cindy Thielen.

Thielen-Montgomery was asking the court to make her the guardian of her 19-year-old daughter, who was diagnosed with autism at 13. That meant the mother would have complete control of her daughter’s life choices for years to come.

Cindy Thielen didn’t want this. She knew she needed some help but wanted to control her own life.

She was soft spoken and kept her eyes downcast when a court-appointed assessor, known as a “visitor,” met her to prepare a report for the judge. Her autism was a “pervasive developmental disorder” that may require Thielen to have a guardian for the rest of her life, the visitor wrote, urging that the guardianship be approved.

On the day of the hearing, Thielen wasn’t in the courtroom even though she wanted to be, she said later. A case manager told the judge it would cause Thielen too much anxiety to attend the hearing.

Thielen-Montgomery, in an interview, didn’t recall her daughter asking to be at the court, although she said her memory has faded in the 12 years since then. Thielen signed a court notice of the hearing, and she went to school that day like it was any other Tuesday. By the time she got home to their Ellsworth apartment that afternoon, her mother had the guardianship paperwork.

Thielen-Montgomery said guardianship was the right choice, “at the time, but I should have given her a chance.”

“I felt afraid of her getting used by somebody, (and them) taking advantage of her in regards to money,” Thielen-Montgomery said in a recent interview.

Everyone in Thielen’s life, at the time, was saying she couldn’t be on her own.

“I don’t think they felt like I was going to amount to much or have the chance to live on my own,” said Thielen, now 31 and living independently in Bangor. “It made me feel sad, because I knew that there was more that I could do to try to do good things in the world.”

For decades in Maine, when someone with an intellectual or developmental disability has turned 18, the decision by the courts often has been to put them in a guardianship — one that can last a lifetime.

Laws that went into effect in Maine in late 2019 require judges to first consider a less restrictive alternative called “supported decision-making,” a nationally recognized tool used by people with disabilities to help them assess the consequences of big and small decisions.

The person picks supporters and talks through a decision — like any adult might consult a friend in the medical profession before agreeing to surgery, or a group of friends would discuss ways to save money for a car.

Guardians are supposed to be a last resort to make medical, financial and housing decisions for an adult whom a judge deems cannot make or communicate their own choices.

But in the nearly four years since the law passed, Maine’s probate judges have infrequently gone for supported decision-making. A limited amount of training has been offered to probate judges on this alternative, and some say they are unsure how to apply it.

No court or state entity has tracked the use of supported decision-making. Nor does anyone track guardianships statewide.

Some of Maine’s 16 independent county probate courts only recently began tracking adult guardianships, a survey sent by The Maine Monitor in April found. Among the probate courts that responded to the survey, several didn’t know the number of active guardianships in their counties. A few courts said they don’t know if the people in guardianships are still alive, the Monitor reported in June as part of an ongoing investigation of the state’s part-time probate courts.

Supported decision-making avoids the severe restrictions of guardianship. The judge decides the adult can make choices, with help, and retains the right to make decisions without any further court involvement. But it may not work for everyone.

Some family members of adults with a range of disabilities say a full guardianship is essential to protect their relatives, who are vulnerable to scams, exploitation or abuse. They say having legal status as a guardian allows them to make decisions about medical care, education, housing and how fixed Social Security incomes are spent.

They are at odds with the state’s top disability advocacy organization, Disability Rights Maine, which has taken a hard-line stance against guardianship. The disability rights group contends that guardianships are overused in Maine. The organization has represented people with disabilities in probate court to end their guardianships. 

Too often attorneys with the organization said they find that people were not assigned a lawyer when a petition for guardianship was first filed with the probate court, said Lauren Wille, a disability rights attorney who used to be a criminal defense lawyer. 

“If the same percentage of criminal defendants did not have attorneys as people coming under guardianship — which is really just as restrictive — I think people would be flabbergasted,” said Wille.

One Topsham mother, Debbie Dionne, agonized about whether guardianship was necessary for her daughter, Kate Riordan, who has cerebral palsy and an intellectual disability following a traumatic birth four decades ago. Dionne ultimately decided Riordan needed a guardian.

Now 43, Riordan can select quickly on an iPad the people she wants to be with — Nancy, Kristi and Matt, who are friends she grew up with or lives with at a Brunswick group home. But she doesn’t know how long she has lived at her home or how to describe her medical needs.

Many are pushing supported decision-making, Dionne said, but she doesn’t see it as the right choice for everyone.

“You know in your heart what is best for your son or daughter, and I would never presume to make decisions for her,” Dionne said.

“Yeah!” Riordan said immediately.

Judges unsure

Probate judges considering less restrictive alternatives to a guardianship said there is little direction in the law. This has left some of them unsure about how to apply “supported decision making.” Yet the law requires probate judges to rule it out before appointing a guardian.

Fifteen states have taken an additional step to define what a supported decision-making agreement entails or how it can be terminated, but Maine law does not.

For example, Rhode Island has strict rules about having written, signed and dated supported decision-making agreements that authorize certain people to help with specific decisions. The law also disqualifies an employer or a person paid to provide direct support services from helping with those decisions.

There is disagreement among guardianship experts about whether detailed laws about supported decision-making are necessary, said David English, a University of Missouri law professor and chair of the national committee that wrote the revised guardianship laws Maine adopted.

These laws can formalize the supported decision-making process and potentially give banks or medical providers more confidence in a person’s capacity to make their own choices, English said. But the laws various states passed are very detailed and are all different. 

“There’s a serious debate whether these detailed statutes are useful or effective,” said English.

There are also options other than full guardianship that already give another person the right to make limited decisions for another adult, such as a power of attorney or an advanced health-care directive. There are also arrangements that allow someone to manage the Social Security benefits of an adult who needs help.

The test

A probate judge in any adult guardianship case ultimately decides whether a person can safely make their own decisions or whether they need someone else to make them. 

Families in all walks of life find themselves in the courtroom to make this decision for parents with dementia, people in early adulthood with schizophrenia or teens with disabilities approaching their 18th birthdays.

Resisting a petition for guardianship can be particularly challenging for young adults with intellectual or developmental disabilities. They are in the unique position of having to prove to a judge at age 18 that they are capable of making “good choices.” Complex family dynamics are often at play and teens don’t realize the rights they are giving up when they agree to let a parent be a guardian, legal experts said. And the outcome can be permanent.

“Guardianship takes away your civil rights. It takes away your civil liberties and formally — not in some abstract way — is the court taking away your rights and giving those rights to someone else to hold on your behalf or exercise on your behalf,” said Zoe Brennan-Krohn, an attorney with the national ACLU Disability Rights Program. 

Guardianship can be hard to undo. It is not a simple matter of a guardian agreeing to relinquish their decision-making power, she said. A judge needs to be convinced that the adult has regained the capacity to make their own decisions. The judge can assign another guardian if the judge thinks the person still lacks a decision-making capacity. It’s a monumental task for any adult, whether they have a guardian because of illness, injury, age or disability.

“Very often, people end up staying in guardianships because they still have a disability,” Brennan-Krohn said. “You don’t stop having most types of disabilities.”

Brenda Clough has worked as a case manager for Special Children’s Friends in Hancock County for more than 15 years. She starts advising parents about guardianship when their children reach high school. It all comes down to safety, she said. Together they go in detail through the teen’s skills, such as their ability to use a stove or a toaster oven without catching themselves or the kitchen on fire, she said.

“Most of my kids have gone to full guardianship with the intent that supported decision-making will be reconsidered in the future once the skills are learned,” Clough said.

But reconsideration of a guardianship for supported decision-making has not happened with her clients, Clough acknowledged. In fact, the opposite has happened, with some parents seeking full guardianships, she said.

Disability Rights Maine trained 2,000 family members, case workers, lawyers and probate judges about supported decision-making as the law was coming into effect. The group also wrote a user guide and provided copies to each probate court.

“The default in Maine used to be full guardianship at 18,” said Staci Converse, a managing attorney with Disability Rights Maine.

Maine’s new guardianship law is a leap forward in progressive thinking about guardianship, she said. 

Still, some forms the probate courts rely on to evaluate the need for a guardian are skewed toward finding the adult lacks the ability to make decisions on their own, she said. 

For example, a doctor’s report is required with every guardianship petition. The two-page form asks the medical professional to check boxes on a list of skills the person is incapable of doing, such as finding a home, pursuing medical care or appropriately spending money.

“It leads almost to a determination that a person needs a guardian as written,” Converse said. 

A court-appointed visitor also is assigned during every adult guardianship case to advise the person of their rights and make a recommendation to the probate judge. There is no formal training program for the visitors, and they had limited training after the guardianship law changed in 2019.

Susan Mauro, a visitor contracted with the Kennebec County Probate Court, said adding supported decision-making to the law made her job more difficult and “clouded” the choice between guardianship or not. 

Mauro’s recommendations are based on an interview with the adult and proposed guardian. She watches their behavior to see if they’re aware of their surroundings, she said. For example, when she asks a teen with an intellectual disability about their date of birth or hobbies and they look to their parents, “you can see that they’re not ready to be a fully independent adult,” Mauro said.

Judge Elizabeth Mitchell, who assigns Mauro to cases, said she makes her own determination and doesn’t always follow a visitor’s recommendation. 

“(The) probate court does not order supported decision-making. We ask on all our forms that petitioners and visitors explore that as a possibility,” Mitchell said.

‘Kate is thriving’

Kate Riordan wants to know when certain workers will be at the house. She wants the pictures, plush bears and flowers on her nightstand arranged a certain way. And she wants to spontaneously call family members on FaceTime. Riordan is a strong-willed woman living with cerebral palsy and an intellectual disability, and she relies on her mother, who is also her guardian, to make major decisions. 

Riordan’s mother, Debbie Dionne, struggled to decide whether to seek guardianship when Riordan turned 18. Dionne decided it was the best option to ensure Riordan’s medical and housing needs were met while leaving Riordan in control of her daily social decisions.

A barrier to Dionne and Riordan using supported decision-making is that Riordan does not initiate decision-making. She does not have the language tools to ask for advice, Dionne said. When a decision needs to be made, Dionne starts their discussions.

Riordan has used sign language since she was in preschool, but because she has cerebral palsy, she lacks the fine motor skills to spell words with her fingers. She fills in the gaps with gestures, spoken words, and an iPad filled with icons and programmed responses representing her favorite foods, family members and critical information like her full name and address. 

Dionne fills in the missing details during an interview on a recent Tuesday, asking Riordan, “Can I add a little bit to that? Is that OK?”

Riordan’s life is full of choices at the home she shares with other adults with intellectual or developmental disabilities run by the Independence Association in Brunswick. She moves freely around the one-story building, eating meals in the large central kitchen, watching Animal Planet in the living room, and making crafts from the beads, paper and paints that are always available.

Riordan is Dionne’s only child. Dionne labored for more than 14 hours at the Parkview Adventist Medical Center, now Mid Coast Hospital, in Brunswick on Oct. 28, 1979. The fetal monitor strapped across her full-term abdomen showed a flat line. Riordan arrived in the world without a sound.

“It seemed like forever, but it was 10 minutes,” Dionne said. “She was resuscitated by the pediatrician. He just kept working on her and working on her. And she didn’t cry and she didn’t cry; then finally, it was this horrid cry.”

Doctors said Riordan would be tube-fed the rest of her life, wouldn’t sit up, wouldn’t walk and would be blind. Dionne was advised soon after birth to send Riordan to live at the Pineland Center, the state’s institution for the disabled. Pineland closed in 1996.

Only one doctor offered a different opinion: “You should take her home and love her just like you would have if this never happened. Just love her.”

Riordan rose above the doctors’ expectations. She started walking when she was 8 years old and still uses a rolling walker for balance. She wears lavender glasses over attentive blue eyes. She loves to eat lobster – like a true Mainer.

Her favorite hobby is “bowling,” she says, using an iPad. She navigates to the “people in my life” and selects Matt, or “Hubba Hubba,” who she plays Wii bowling with, and is her longterm boyfriend. There’s a framed picture of them on her dresser.

“I’m a very different person than I was when she was born,” said Dionne. “Sometimes you don’t always get what you want, but it’s actually better. You have all these dreams.”

Dionne, 71, trails off at the end of her thought. She, like many parents, dreams of a day that their child could be independent. She worries about who will take over as guardian when she is gone.

Dionne has seen Riordan shut down when she can’t tell people what she likes. During one particularly difficult period, “she retreated, got depressed, lost 10 pounds,” said Dionne. Riordan started seeing a counselor who uses sign language and has improved.

Riordan’s life is the best and most stable it has been in a long time, and that is because she’s had a guardian intervening. Riordan pats a spot on the bed beside her, inviting her mother to sit. Together, with gentle suggestions from Dionne, Riordan finds the answers to questions on her iPad. When asked, Riordan knows that her mother is her guardian. She doesn’t have the words to say what a guardian does.

“Kate is thriving and happy and flourishing,” Dionne said, “because I’m in her life and making sure that happens.”

Overuse of guardianship?

Maine adults with intellectual or developmental disabilities who receive state services appear to be subjected to full guardianship much more often than the national average, although that may be changing.

Maine contracts with providers of group homes, day programs and shared living arrangements to meet people’s needs, which are funded by MaineCare. Two major programs are the Section 21 and Section 29 waivers.

There are 1,985 adults waiting for the Section 21 waiver, which supports people who need near-constant supervision, according to state data. 

People with intellectual or developmental disabilities who are at risk of abuse, neglect or exploitation are the state’s top priority for any opening in the Section 21 waiver program, according to state rules. Those with a lower priority level can wait years for a spot to open. The state is in the process of creating a new “lifetime waiver” to eliminate the wait lists, the Monitor reported in January.

A survey of 400 adults in Maine receiving Section 21 and Section 29 waiver services found 60% had a full guardianship. The finding, part of the 2018-2019 National Core Indicators survey, is above the national average of 33% of surveyed adults with intellectual and developmental disabilities having full guardianships.

The Maine Developmental Disabilities Council testified to state lawmakers in 2019 that they did not know why Maine’s use of guardianship is so high, and would welcome legislation “that has the potential to impact guardianships.”

Current state data indicates that 495 adults with intellectual or developmental disabilities are subject to guardianship in Maine, making up 8% of individuals in the state’s Sections 21 and 29 waiver programs, said Jackie Farwell, a spokeswoman with the Department of Health and Human Services.  

Disability Rights Maine, the state’s designated Protection and Advocacy agency for people with disabilities, has taken the stance that guardianship is not justified if a person can communicate, even minimally. 

There are people within the disability community who may never be able to use supported decision-making. And attempts to remove guardianship as an option in Maine have frightened parents of adults with complex needs. 

One of those parents, Kim Humphrey of Auburn, gave up a career in public health to advocate for her son, Dan Humphrey.

At age 2, Dan was diagnosed with congenital dysphagia with the possibility of autism, which was later confirmed to be autism. He requires around-the-clock support from multiple people to get through the day. He communicates with head nods, and has an iPad but only limited capacity to navigate it. He was enrolled at an out-of-state school specializing in students with autism and intellectual and developmental disabilities from ages 11 to 20, where he received one-to-one support. 

With the right help, Dan, now 34, can help deliver food through Meals on Wheels with his support team, be better understood by those who help care for him, and care for his basic hygiene. Without support, those skills diminish. And when there are not enough direct support professionals or if the people don’t understand Dan, or if he’s in pain, he can also become aggressive, his mother said. 

“If you say that ‘nobody’ needs a guardian and then you meet somebody like him, well then, is he nobody?” Kim said.

Kim explored 10 provider agencies that operate group homes that could possibly meet her son’s needs when it was time to move Dan back to Maine. Without the full authority of guardianship, she doesn’t think she could have gotten him into the right home. Dan was approved for a Section 21 waiver in 2009. 

None of the nine guardians interviewed by the Monitor said they wanted to take away decisions from their relative with a disability. Their fears were of fires – set in kitchens when unattended – food eaten in excess, to the point they became sick, or situations where sexual exploitation was possible.

Maine is transitioning from all guardianships to some supported decision-making, said Margaret Cardoza of Portland, an adult living with a developmental disability. 

“Just like any law that gets changed. It may be the law, but the lifestyle, the culture, the traditions, the attitudes take longer to adjust. And attitudes are the most difficult part that needs to change,” Cardoza said. “It’s about time.”

Cardoza is married and owns a home. She is also a vocal self-advocate and has pushed for the state to make supported decision-making available to people with disabilities since 2013. Through her advocacy she’s met other people with disabilities who have not been allowed to get married, live in places that allow them to come and go freely, or even vote. 

Under guardianship, adults retain only three privileges — the right to marry, vote and retain a lawyer. Still, probate judges have the discretion to take away the privileges to marry and vote. 

People with disabilities, such as Cardoza, who are visibly “on the front lines” advocating for themselves for self-determination, choice, independence and civil rights, have the potential to do a lot of good to eliminate the stigma of people with disabilities, Kim said. 

But people like her son, and some people with higher needs, are not among them and may never be, she said.

The strong opposition to anything other than supported decision-making risks cutting services, policies, money and resources for people who need guardianship. The stigmatization of guardians also has the risk of dividing the disability community between the people who need guardians and those who don’t — making the people in guardianship invisible, Kim said.

A journey to be free

As Cindy Thielen tells it, no one would listen when she spoke about her future.

A curtain of long brown hair covers Thielen’s profile, and she speaks softly with a unique rhythm. Years of speech therapy fixed what she describes as “gibberish” she spoke as a young child. She also spent a long time working on making eye contact with people. 

One of her special education teachers in high school said she “sounded like a 5-year-old,” Thielen recalled.

How a person speaks can be a flawed measure of their ability to make decisions, especially people with disabilities who may speak in an unconventional way. 

“A lot of our clients communicate in sort of non-traditional ways,” said Wille, the lawyer with Disability Rights Maine. “You spoke with Cindy (Thielen); her voice is not a traditional voice. People hear her voice and they jump to all sorts of conclusions about her. And then when you hear what she’s actually saying, she breaks apart those notions.”

Thielen, who uses supported decision-making informally, said people see her differently because of her autism. With her disability, it was assumed she couldn’t attend college, even with good grades and after taking the SAT. 

The special education teachers recommended Thielen do two more years of high school and not graduate when she was 18. Instead, her mom suggested a compromise, Thielen recalled. She would complete an additional year at the Hancock County Technical Center, where she was already attending half of the school day.

“I would say what I wanted, and it seemed like it would go their way anyway,” Thielen said. “They wanted me to stay back and graduate essentially with a blank diploma cover, and I didn’t want that. I got so upset, I wanted to almost walk out the door.”

Most parents pursue guardianship of a child with disabilities, said Linda Henderson, who was Thielen’s case manager and who filled out much of the guardianship petition and plan that was submitted to the probate court in 2011. Parents often want help going through the court process, she said. 

Henderson said she did not remember Thielen, and that she was not the typical client if she was able to attend college. Thielen clearly had strengths, Henderson said.

“I don’t think she quite understood the legality of what guardianship meant,” Thielen said of her mother, who went to probate court in 2011 to gain guardianship of Thielen, “because I don’t think she really understood what was involved and what she had to do.”

Thielen told The Maine Monitor that her life was far less stable than the one described on paper to the probate court. 

Thielen-Montgomery struggled to get approved for Social Security disability benefits for more than three years following a workplace injury, she said. The checks were not enough to cover all their living expenses.

They were forced out of their apartment in Ellsworth because the electricity was shut off, and they briefly lived in a homeless shelter in late 2011, Thielen said. Her mother abandoned another apartment and moved into a private residence where Thielen said she didn’t feel safe. In 2015, her mother withheld two months of Thielen’s Social Security disability payments — worth $1,466, a probate judge ruled.

Thielen doesn’t believe her mother was ill-intended with the guardianship. But it meant Thielen-Montgomery controlled the bank account where her Social Security disability payments were deposited. Thielen-Montgomery said Thielen had a debit card and they would discuss what to buy.

Thielen also could not sign paperwork at the doctor’s office on her own, and the physician would speak directly to her mother — even when Thielen was in the room, she said. Thielen-Montgomery said this was true, and that the doctors should have spoken to Thielen.

During those tumultuous years, Thielen had applied and was accepted into college. From her dorm room in 2015, Thielen emailed the probate court and asked to terminate her mother’s guardianship. 

By then, she was about halfway to graduating from the University of Maine with a bachelor’s degree in journalism and a minor in studio art. She’d lived on campus, and had navigated the social and academic demands of college.

She was immediately appointed an attorney, which Thielen had not been afforded when she was 19 and her mom was first seeking to be made Thielen’s guardian. 

After one hearing, the judge suspended the guardianship.

Adults subject to a guardianship petition are advised they have the right to hire a lawyer, but are also told that the cost of paying for a lawyer may come out of their own pockets. 

A state bill proposed in 2019 would have required lawyers for all adult guardianship cases. Probate judges were among the stakeholders to object, in part because of the added cost to county budgets. The bill did not pass.

“This is another unfunded mandate, mostly unnecessary. Now if the State agrees to pay for all those attorneys, I might be OK with it even though I’m not convinced that it is totally necessary,” Somerset County Probate Judge Robert Washburn wrote in an email to the other judges at the time.

All 10 probate courts that responded to a Monitor survey said they will assign an attorney if the person opposes a guardianship. Probate courts are separate from the rest of Maine’s judiciary and are funded by county governments.

In Thielen’s situation, the guardianship suspension left her case in limbo. She graduated from college in 2017, started working in the Center for Community Inclusion and Disability Studies at the university, and moved into her own apartment, but technically she was not free. 

In November 2021, Disability Rights Maine intervened to finish the termination of her mother’s guardianship. Thielen-Montgomery didn’t fight the request, she said.

“I felt as though she could handle it and I knew my daughter well enough — she still calls me on a daily basis. We do that. She communicates with me what she needs and what she might get and she asks me, ‘what do I think?’ ” Thielen-Montgomery said.

It had been nearly 11 years since the day Thielen came home from school and her mom had those guardianship papers. 

Eleven years since she lost control of her own life.

Eleven years since she could make almost any significant decision on her own.

On April 12, 2022, a probate judge gave Thielen her life back. 

“There’s a lot of us out there that want to prove — yes we can,” she said.

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The decision that can last a lifetime