A Missouri mother says her experience with the guardianship system has inspired her to push for changes in state law to protect families like hers.
by Ceilidh Kern
When Twila Foley brought a Christmas gift for her son, Christopher, to his nursing facility in Plattsburg, Missouri, she was not allowed to enter the building’s lobby.
Instead, she watched him open his gift — a pillow with a picture of his dog, Oakley, printed on it — through a glass door.
Christopher asked the aide who accompanied him if he could go out to hug her. The aide said no.
“So I watched as he opened his present alone in a skilled nursing facility, and I thought of the Christmas dinners that he used to have, filled with family and friends,” Twila said. “I thought about all the things that he is no longer allowed to do and how that must feel for him.”
Christopher, a 35-year-old with cerebral palsy, died Aug. 19, 2025, from cardiac arrest in the nursing facility where he lived the last several years of his life. He weighed 94 pounds.
The Beacon spoke with Twila on Aug. 6, before Christopher’s death. She hadn’t spoken with him for months after his father cut off communication. Now, she’s advocating for a law that seeks to combat isolation by centering the wishes of people under guardianship.
For most of his life, Christopher, who went by “Topher,” had lived at home. Raised in Osceola and Pleasant Hill by his mother, he underwent 19 surgeries over the course of his life, including the installation of an experimental pump that released medicine into his brain to loosen his muscles.
Between the medicine and physical therapy, Topher was able to walk in a walker and hold down a job at a nearby sheltered workshop. In his free time, he went parasailing, attended concerts and hung out with friends.
From the age of 18, Topher was under the guardianship of his mother, which gave her the legal power to make all of his decisions for him.
“I had no idea, when I obtained full guardianship of him … fully what that meant,” she said. “They said it had to be done so I can continue with his medical care. What they didn’t tell me was the full ramifications of total guardianship.”
Topher’s final years
In May 2020, Twila went out of town for a seasonal job in South Dakota, leaving Topher with a caretaker.
That marked the beginning of an ongoing he-said, she-said dispute about the last years of Topher’s life and his wishes during that time.
Twila said she was gone for two weeks to get herself settled before she planned to return to Missouri to get Topher and bring him to live with her there. Her ex-husband and Topher’s father, Robert Foley, said she was gone for over three years, but Twila said that’s not true.
“It hadn’t taken me three years to come back, but three years to find Christopher,” she said.
A week after Twila left, Robert took Topher out of the caretaker’s home and went to court, arguing that Twila had abandoned their son. He got temporary guardianship of Topher in July 2020 and obtained full guardianship by December.
The abandonment charges were later dismissed, but Robert remained Topher’s guardian.
Topher lived with Robert for a little over a year before he moved into a nursing facility.
“We had been trying to get him into a group home. It was in the middle of COVID still, so that was not a possibility. He started acting up, having outbursts,” Robert said.
“We went to North Kansas City Hospital for a behavioral assessment,” he added. “To this day, I’m not sure what he told the nurses, but I was called in for him to bring his stuff (and told) that he would not be coming back (to my home), per his wishes.”
When Twila couldn’t get in touch with Topher and learned from family what had happened, she said she spent the next several years trying to find him. To do so, she tried to contact Robert, asked friends and family for any information they had and went to law enforcement. But she said the police were not willing to help her until the abandonment charges were later dropped.
“So I decided to go door to door until I found him, and I did just that,” she said. “I went door to door to every skilled nursing facility until I found him.”
But when she came back the next day, she was told by staff that she was not allowed to visit him.
“I requested no visitation because it was not good for his state of mind,” Robert said. “She put this young man through emotional distress multiple times.”
He said Topher had told therapists that Twila “messed with his head too much … promising him things and then not delivering.”
On several occasions since he became his guardian and as recently as April 2025, Topher asked Robert not to let Twila visit or contact him, Robert said.
“When I was asked by the ward not to allow her in his life, I was respecting his wishes,” he said.
Robert said he offered to set up monitored visits, but Twila said no.
Instead, she kept in touch with Topher over the phone. But his behavior started to change, Robert said.
“Outbursts, cursing, arguments with everyone. Mom — he wanted to be with mom. Mom was promising him who knows what,” Robert said. “She created a very hostile place for him, urged him and encouraged him to do whatever he could to get himself removed from the nursing home.”
Twila acknowledged that Topher was having outbursts at this time but said they weren’t the result of their contact.
“The outbursts were because Christopher didn’t belong there and Christopher himself was crying out and reaching out for help,” she said. “It was a manipulated situation where the guardian was trying to keep him in isolation to prevent people from seeing the real facts, taking the focus away from his declining health.”
Twila went to court multiple times, asking to regain guardianship as well as to be able to visit Topher in the nursing facility, but was denied both.
When Robert became Topher’s guardian, he had his pump removed. According to court documents, it had stopped working. Twila said there had been issues with it before, given the experimental nature of the device.
According to Robert, when he took Topher in for a routine appointment to refill the medicine in the pump in 2022, the doctor told him that the tube connecting the pump to Topher’s brain was causing irritation to Topher’s nerves.
The doctor recommended the entire pump be removed, and Topher agreed, Robert said. When asked why a new pump wasn’t installed after, Robert said Topher had asked to not get a new one.
With the pump gone, Twila said, “His condition deteriorated. He can’t stand up anymore.”
At the nursing facility, Topher was given medicine that Twila said made him vomit, but when he raised concerns, he was forced to take it by staff and his father.
“I have so many phone calls and recordings of Topher — he would set his phone on speaker and hide it behind his pillow so I could hear what he was having to endure,” she said, adding that things were “so bad, he would call 911 or have me call 911 for an ambulance to come and help him and the ambulance would be refused at the door, per the guardian’s directions.”
Robert said the nursing facility had security camera footage of Topher making himself vomit after taking the medicine and that he’d been able to take the drugs without a problem before he got back in touch with his mother.
“The more communication Topher had with me, the less he was able to have his rights, such as using a cellphone,” Twila said. “His friends tried to go visit him and weren’t even allowed to take him an Easter basket.”
In a legal filing from May 2024, Robert told the court that Topher “has a cellular telephone and other communications devices available to him and is generally able to communicate with whomever he chooses.”
Robert later told The Beacon that he had taken away Topher’s devices “when his behaviors became too excessive, when he kept refusing his medicine.”
“I didn’t want to, but when the communication between her and him got to a point that he was going into the director’s office (at the nursing facility) and starting an argument with her on speakerphone, that’s a little excessive,” he said.
In 2024, Topher had a friend in the facility write several letters to his mother. On one envelope, mailed in July 2024, he had the envelope addressed to Lori Samples, a friend, from “Chris Samples.” He also had the friend mail it while they were at church so it wouldn’t go through the facility’s mail system.
“Thanks, mom, for being so good to me all through the hardships,” he wrote. “I have no phone. Dad called Roger and he took the phone. I guess he really doesn’t know how blessed I am having a mom like you to love me.”
Twila said the isolation Topher experienced in the nursing facility contributed greatly to the decline in his mental and physical health.
“Isolation can be so damaging to people with a guardian — it’s detrimental to their health. It’s been proven that it lowers life expectancy, and it’s taking away their fundamental right,” she said. “What man has a right to tell another man he can’t make a phone call?”
‘That’s what Topher’s Law is going to change’
Through her experience in court, Twila said, she learned that under Missouri law, “the guardian has all the rights.”
“Until that changes, the situation that’s happening to Topher and so many others in the state of Missouri is not going to end,” she said.
Her experience inspired Twila to push for a change in the law. Her proposal, called “Topher’s Law,” aims to combat isolation by requiring guardians to petition the court to block a person from seeing the ward.
Under the current law, the order is reversed, and people who have been blocked from seeing a ward must themselves petition the court for access.
Topher’s Law would also codify several rights of wards, including:
- The right to spend time with family.
- The right to consent to calls and visits.
- The right to express their own wishes in court related to visitation and guardianship restrictions.
- The right to access an attorney at no cost to help with visitation challenges.
- Protection from retaliation for asserting their rights under the law or maintaining relationships with family members.
“I feel they should have the right to do these things as anybody would have the right to do these things,” Twila said.
While the proposed law was inspired by her own experience trying to visit Topher while he was under Robert’s guardianship, she said: “I’m not doing this to attack him. I’m doing this to attack a flawed system.”
As part of her effort to get Missouri’s law changed, Twila launched an online campaign — which has gathered more than 250 signatures — and reached out to local state lawmakers.
Sen. Rick Brattin, a Republican from Harrisonville, said he’s heard from Twila and is interested in helping her either by carrying the legislation himself or helping her find someone who can.
“I think it’s terrible that somebody can be there for their child, and the way the system’s set up, they can be ripped out from underneath them. It’s really heart-wrenching,” Brattin told The Beacon.
“It’s something that we definitely need to address,” he added. “If I’m not going to spearhead it and be the bill sponsor, (I want to) at least be part of the discussion.”
In a later conversation, Twila told The Beacon she’d also received support from Rep. Mike Steinmeyer, a Republican from Sugar Creek, and Sen. Adam Schnelting, a Republican from St. Charles.
Twila said that Topher’s Law focuses on preventing isolation because she believes it is “the most pressing piece,” but she said “there’s so much more that needs to change.”
Asked whether she will continue to advocate for changes to the guardianship law if Topher’s Law passes, Twila replied, “Absolutely.”
“I won’t stop until I fix this. I won’t. I can’t. I promised him,” she said. “We can’t stand here and let this happen to people. I won’t stop, and then I’ll push on. I’ll push for more rights, and I’ll push for it to go federal.”
Changing guardianship statute and culture
Twila’s efforts come after Missouri’s guardianship law was changed in 2018 to codify wards’ rights, including the right to communicate freely and privately with family and friends.
While the law guarantees access to loved ones, it also clarifies that access can be limited by the guardian if they believe contact with a particular person could harm the ward.
Jennifer Hulme, co-founder of advocacy organization Alternatives to Guardianship, said cutting off visitation can often be the result of serious concerns, but sometimes “it can be out of convenience for the guardian.”
“We would like to think that’s not something that happens, but in reality, it does,” she said. “The guardian just has to say, ‘This person is causing the ward undue anxiety or undue stress,’ and they can block that communication.”
The decision can come after friends or family raise concerns about care, she said.
“If the family or friend steps in and starts to call the guardian and say … ‘They weren’t very clean, it didn’t look like they had changed their clothes for a few days,’ and they keep reporting those concerns, sometimes it’s seen as them rocking the boat,” she said.
David English, a law professor at the University of Missouri in Columbia and co-chair of the Missouri Working Interdisciplinary Network of Guardianship Stakeholders, has helped to shape guardianship policy in Missouri and elsewhere.
“The idea behind all recent legislation is that guardianship should be the absolutely last resort, because you’re appointing someone who literally succeeds to all the individual’s rights,” he said.
He said guardianship is often seen as the only solution when alternative approaches might get a ward the care and support they need while also preserving their rights.
“My great concern for adults with developmental disabilities is that oftentimes, it’s automatic,” English said. “It’s been part of the culture for decades.”
There are currently more than 35,000 Missourians under guardianship, according to data from the Office of State Courts Administrator. That number includes older people, people with disabilities and others that courts across the state have decided need help making decisions.
According to English, an ideal system would allow for a complete evaluation of a person’s capacities and needs and an exploration of all possible solutions — like supported decision-making, a less restrictive alternative — before a guardianship is pursued.
He said that although progress has been made on guardianship, a 1988 report by the American Bar Association calling for reforms to the guardianship system included many recommendations that “are still current today.”
“These problems aren’t new,” he said. “Things are getting better, but slowly.”
Full Article & Source:
Blocked from seeing her son, a Missouri mother fights to change the state’s guardianship law to help others like him
