AIM Services will lead Supported Decision Making in New York

By Aaron Shellow-Lavine

A nonprofit based in Saratoga County is set to pioneer the statewide expansion of a program that supports individuals with intellectual and developmental disabilities.

Dwight Joyner says supported-decision making has allowed him to live a more independent, fulfilling life.

“It means that I can make my own choices and I can do things I want to do – making my own meals, take a walk down the street, be able to have relationships without somebody telling me I can’t be in a relationship,” said Joiner.

First piloted in New York in 2016, supported decision-making, or SDM, is a process that allows people with intellectual and developmental disabilities to make decisions with the help of a network of trusted individuals. The idea is to promote independence for people with IDD, putting them at the center of their day-to-day management, rather than relying on a singular person – typically a parent – as often happens in a traditional guardianship model.

In 2021, the New York Office for People With Developmental Disabilities expanded the state's pilot SMD program utilizing federal American Rescue Plan Act funds. Now, a nonprofit in Saratoga County — AIM Services — is continuing to expand SDM programming within the state over the next five years with a nearly $8 million contract.

OPWDD Commissioner Willow Baer says with AIM’s guidance, New York could be a model for the rest of the country.

“It's also available in New York State for people without disabilities, other people who are aging, for example, might need a little support in making decisions as they age. And supported decision making is available in New York State for anyone that wants to use it right. The $8 million contract focuses on people with developmental disabilities. We are excited to be the first in the nation to make that available, and to really be a model nationally for this program and for how person-centered it makes services in New York State,” said Baer.

Through SDM, an individual creates and signs an agreement that outlines various people, or supporters, to whom they can turn to help make decisions regarding their health, finances, and living opportunities.

“So, for example, for medical or health decisions, maybe somebody really wants their mom to assist with that. But when it comes to relationships, they actually want their best friend to help,” said Alexis Harrington.

Alexis Harrington is chief of program implementation at AIM, which in 2024 served 4,000 people in nearly 400 supported and independent residential facilities in Saratoga, Washington and Warren counties.

She says individuals participating in SDM are better equipped to lead their own lives.

“We make decisions every single day of our lives, and we don't even think twice about that. So, the fact that we have people with disabilities that are discriminated against for assuming no capacity. Right? We are now flipping that concept on its head. We are aligning with the United Nations perspective that every person is a person and a human being that is able to make their own decisions,” said Harrington.

AIM CEO Christopher Lyons says the organization is well on its way to reaching the roughly 100,000 New Yorkers who live with intellectual and developmental disabilities.

“People are having legal capacity. They're having autonomy. They're making their own choices. It's a beautiful thing to see somebody enjoy the good and the bad of their own choices. That's what makes us human right. It's the mosaic of our choices, our experiences, the good and the bad. You know, we used to keep somebody from dating somebody because they might break their heart who hasn't had their heart broken. So now everything is natural. It's we don't substitute our judgment. We're not in a control model or in a support model. Life is messy, but because of that, it’s beautiful,” said Lyons. 

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AIM Services will lead Supported Decision Making in New York 

Woman accused of befriending disabled Miami-Dade man, stealing his home

by Chris Gothner

MIAMI-DADE COUNTY, Fla. – An investigation that began nearly five years ago led to the arrest of a woman on grand theft, fraud and exploitation charges after authorities said she befriended an intellectually disabled Miami-Dade man, acted as his caregiver and then stole — and later sold — his home.

Miami-Dade Sheriff’s Office deputies took Madeline Lostal-Furst, 56, of Limon, Colorado, into custody at Miami International Airport on Thursday under an arrest warrant.

According to a Sept. 4, 2024 arrest warrant, the 59-year-old victim is “functionally illiterate” and a judge has deemed him “totally incapacitated” due to his intellectual disability.

Lostal-Furst is accused of obtaining a power of attorney over the man and then transferring his home, in the 14500 block of Southwest 291st Street in the unincorporated Leisure City area, to herself using a quit claim deed in 2019. She then sold it to an investor in February 2022 for $190,000, the warrant states.

The victim had inherited the home from his brother in 2014, according to the warrant.

Authorities said the victim’s sister contacted the Florida Department of Children and Families in April 2020 to report that he was being “exploited” and that she believed his “life was in danger.”

The victim’s sister told DCF workers that a woman, later identified as Lostal-Furst, “posed as his girlfriend and moved into his home” a year prior, the warrant states.

The man’s health had “declined significantly” to the point where he had lost weight and was hospitalized more than 20 times, investigators said she told DCF workers.

“It was believed that the girlfriend was poisoning him or messing with his medications,” the warrant states.

According to the warrant, the man’s sister told DCF workers that Lostal-Furst was “trying to place him into a facility” after stealing his home.

In August 2020, the victim’s sister again called the DCF and reported that Lostal-Furst was locking him out of his home and leaving him outside on the porch.

She said earlier that month, Lostal-Furst dropped him off on the streets of Gainesville, where emergency workers found him wandering, authorities said. He was taken to a hospital and held under the Baker Act and then transferred to an assisted living facility in DeLand, where he’s remained, the warrant states.

Investigators later interviewed the southwest Miami-Dade attorney who prepared the quit claim deed, which was signed on Christmas Eve 2019. He said he asked the victim separately “and asked him if this is what he wanted,” the warrant states.

According to the warrant, the attorney told investigators that the man said he “understood” what he was signing and said it was what he wanted. But authorities said the man “could not have known or understood what he was signing.”

By September 2024, Lostal-Furst was believed to be living out-of-state.

Online records indicate that she appeared in Lincoln County, Colorado court on Feb. 14 for an extradition hearing.

Now back in South Florida, Lostal-Furst was being held in the Turner Guilford Knight Correctional Center on a $45,000 bond, Miami-Dade Corrections and Rehabilitation records show.

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Woman accused of befriending disabled Miami-Dade man, stealing his home

Dearborn Heights woman with disability wins case against guardianship

Judge Freddie Burton Jr. (Photo courtesy of Wayne County Probate Court)

By Dave Herndon

Linda VanWormer, 56, of Dearborn Heights has won a court case to keep her independence.

Wayne County Chief Probate Judge Freddie Burton Jr. recently placed VanWormer under Supported Decision-Making (SDM) instead of placing her under guardianship like it had been requested.

VanWormer has an intellectual disability, but will still be allowed to make her own decisions under the court order.

“I do call the shots now,” VanWormer told WXYZ.

Amy Peckinpaugh, her sister, has had guardianship over VanWormer since 2011. It was at her request that the SDM order was granted.

When Peckinpaugh got the first order, it was because her sister was living in an abusive relationship.

“It allowed me to say that Linda couldn’t go back up north and live with her abuser,” Peckinpaugh told WXYZ. “I had to make that decision to protect her. And so that is why I did that. But it meant I took that right from her. She couldn’t consent to treatment. She couldn’t decide where she wanted to move.”

While legally VanWormer was under guardianship, she and her sister were using the processes of SDM, and decided to make that the legally required process for her.

“Linda uses her family, her friends, providers that support her when she wants to make a decision, she comes to them, and if she needs some extra input, she’ll say, ‘Hey, what do you think of this,’” Peckinpaugh told WXYZ.

The pair said a mix-up with VanWormer’s mental health support agency had put a request through the courts to put her back under guardianship, which is what caused the court case to officially put the SDM order in place.

She said that the mental health agency realized it had made a mistake and helped to hire lawyers to fight for them, instead of against them.

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Dearborn Heights woman with disability wins case against guardianship

“My Human Rights Are Being Violated”: Fighting A Family Guardianship

People with disabilities often must speak up for “dignity of risk”: the right to make choices freely, good and bad. This is Marie's story.

 

by Katie J.M. Baker and Heidi Blake

 

Marie Bergum wanted the chance to live her own life — and make her own mistakes. Her father said that could not happen.

 

Marie was in her 30s and had an intellectual disability. As a teenager, she lived a mostly independent life like other teens and took the bus to a job at McDonald’s, where she helped work the cash register. Marie also cooked at home and took care of the dogs.

After her parents divorced, her father, Jim, became her legal guardian.

Marie did not understand what this meant when she agreed to it, and she later decided she did not want her father to be her legal guardian. (In California, where Marie is from, they call legal guardians "conservators," and guardianships "conservatorships.")

 

She wanted to learn how to do things like budgeting and making medical decisions instead of her father doing them for her. She said, “I need help with life!” and later said, “But I want them to show me, not do it for me.”  

 

Marie worked together with some lawyers and family members who believed she could make her own decisions. She had to be careful that her father did not know about her meetings with them.

 

Sometimes Marie had to be sneaky by calling her supporters from the gym locker room because she felt she had no privacy at home. This was a risk — she said if her dad found out she was on the phone instead of lifting weights, he would call her a liar or follow her the next time she left the house. Marie said if he knew she was trying to fight for freedom to make her own decisions, he might take her phone away from her.

 

Marie’s lawyers told the courts that Jim was controlling her money, not allowing her to have sex with boyfriends, keeping her away from people he didn’t like, verbally abusing her by calling her “stupid” and “fat,” and moving her from city to city without including her in the decision. Marie told court officers that Jim did not allow her to have a lock on her door, take public transportation, cook meals, or choose how much money she could spend each week. “He started saying that I couldn’t do things because I wasn’t that smart,” Marie told BuzzFeed News. “Everything was taken away, a little bit every year.”

 

Jim told BuzzFeed News he loved his daughter, and the world was full of dangers and people looking to take advantage of her. He said, “My job is to protect her and put her on the path that she can succeed as best as she can.” He said his rules stopped her from making mistakes she might later wish she did not make. Jim said that he wanted his daughter to be happy and that being her guardian was the best way to achieve that because she, unfortunately, was not as capable as she thought she was. Jim said many of Marie’s accusations were wrong, but he didn’t take them personally.

 

There are many more stories like Marie’s. People with disabilities often must speak up for “dignity of risk”: the right to make choices freely, good and bad, to learn from and live full lives. Disability rights experts say that everyone, especially young adults, deserves the chance to make mistakes and learn from them.

 

Experts say it can be hard to get freedom from legal guardians who are family members. Many parents of children with disabilities get guardianship as soon as the child turns 18 because schools tell them they should. This is called the “school-to-guardianship pipeline.” Even if parents want to end the guardianship later, it can be hard to do so.

 

There are other options for people with disabilities to get support that do not take away their rights to make decisions. Supported decision-making allows people to choose who will help them make decisions instead of having another person take over the person’s life and make choices for them.

 

Disability rights experts say that supported decision-making can work for many people with disabilities. Researchers learned that when people with disabilities make their own decisions, they are more likely to have jobs and be healthier, happier, and more involved in their communities. Even the National Guardianship Association said supported decision-making is a “promising” measure that “should be considered for the person before guardianship.”

 

Marie filed to end her guardianship in March 2018. She wrote, “My human rights are being violated.” Her father disagreed and told the court, “I hate to say this, but it is a proven truth, that I must not only save Marie from outside predators just waiting for an opportunity, but Marie often requires being saved from herself and her own lack of ability to decide what is healthy and safe for her.” The judge allowed Jim to continue having control over Marie’s life.

 

Soon after, Marie got new lawyers so she could try again to gain her freedom. She created a supported decision-making plan and assigned family members to support her in different parts of her life, such as budgeting, housing, completing job applications, making medical decisions, cooking, making educational plans, and staying safe. This time she won, and the court removed Jim as her guardian.

 

Marie’s Aunt Nancy, together with a program manager from an advocacy center, will be her guardians for one year. Then a judge will decide if Marie can successfully live without a guardian. The court said Jim can never again be Marie’s guardian. “Jim can’t do anything to me anymore,” she said with a wide grin.

 

“Be persistent. Your dreams can come true. Don’t let anyone in your family tell you you can’t do things.”

 

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“My Human Rights Are Being Violated”: Fighting A Family Guardianship