Mar. 17—TRAVERSE CITY — Thomas and Robert Stowe walked into court this week full of anxiety, unsure whether they were minutes away from losing the family home.
That hasn't happened — yet — but the brothers said they feel railroaded by Medicaid and probate court attorneys, who records show sought a sale of the family's $250,000 home to collect an $11,416.98 debt.
"I'm still not sure what services that bill is even for," Thomas Stowe, 63, said Tuesday, gesturing toward binders containing court records, letters and email correspondence related to his parents' end of life.
The federal government requires state Medicaid offices to recoup payment from the estates of Medicaid beneficiaries and, in Michigan, that's handled by the state Department of Health and Human Services.
The National Council on Aging says one way to think about the process is to consider Medicaid participation as an interest-free loan that pays for long-term care and community support, then when the beneficiary is permanently institutionalized or dies, the loan comes due.
But records show Thomas Stowe provided all of his mother's care at home, she had no lengthy nursing home stays and the in-home services local Medicaid providers suggested, while well-meaning, did not work for the Stowe family.
"The call button, all that beeping, just irritated and confused my mom and she didn't understand how to use it," Thomas Stowe said, of Joanne Stowe, diagnosed with Alzheimer's disease in 2018.
The brothers explained how the disease made their mother suspicious of most outside providers offering home visits, and how their parents' bathroom couldn't accommodate offered equipment like a shower transfer chair or wall hand bars.
According to the MDHHS, that doesn't necessarily matter.
"These providers were both paid a monthly capitation payment when your mother enrolled in Medicaid as part of her Medicaid coverage," Amanda George, a manager with the department's estate recovery section, said in a 2022 letter to Thomas Stowe.
"It was included in her coverage whether she used the services or not," George's letter states.
A decade of care
The Stowe family's Long Lake Township home was built with Thomas' and another brother, Michael's help, by their father, Edward Stowe, who died in 2018 after suffering a stroke.
Their mother, Joanne Stowe, died in 2020, and her estate is listed as the owner of the home, although Thomas Stowe has lived there since 2014.
That's the year he sold his mobile home and moved in with his parents as their full-time caregiver.
"My dad was falling a lot," Thomas Stowe said. "And then my mom got the Alzheimer's."
Thomas Stowe acknowledged he had little experience being a caregiver, but voluminous correspondence shows he embraced the responsibility, taking on grocery shopping, meal preparation, home repairs, medical appointments, laundry and personal hygiene tasks.
State Rep. Betsy Coffia (D-Traverse City), whose office has worked with the Stowe family for months to help them navigate MDHHS and Medicaid, said Thomas Stowe likely saved the government hundreds of thousands of dollars by caring for his parents, and his mother in particular, at home.
"He did what you would hope a child of an aging parent with a debilitating disease, if able, would do," Coffia said Thursday.
After Edward Stowe died, Thomas Stowe said he looked for ways to help his mom keep her mind active.
On weeknights, he watched "Wheel of Fortune" with her, hoping to mitigate Sundowner's Syndrome, the heightened confusion and agitation some living with Alzheimer's disease experience late in the day.
One weekend, he took her downstate to research care options and drive past homes she lived in when she was younger.
There was no recognition, he said.
As the disease progressed, Thomas Stowe said he felt isolated and unsure of how to provide his mother the best care, even while she remained adamant about staying in her home.
Thomas said he communicated with gerontologists' offices, PACE North, NPalliative, Catholic Human Services and the Area Agency on Aging of Northwest Michigan.
NPalliative sent a home healthcare nurse and a dietician, services covered by Medicare and Joanne Stowe paid any co-pay amounts.
(Medicare is federal health insurance with age requirements — though some under age 65 with certain conditions can qualify — while Medicaid is a joint federal and state health coverage program with income requirements.)
Edward Stowe was a U.S. Navy veteran, and Thomas Stowe has tended to his father's gravesite, helped his mother pre-plan her funeral and, with an Agency on Aging social worker's help, was able to get his mother qualified for Medicaid.
Lengthy correspondence between Thomas Stowe and staff with Agency on Aging, which he shared with the Record-Eagle, reads like a diary of a son's devotion.
"There are two things I want for Mom, and that would be her safety, health, and well-being; and also for her to be happy," Thomas Stowe said in an Aug. 5, 2019, email to an Agency on Aging registered nurse.
"The one thing I do know is, every day I know less and less about Alzheimer's, and it is the Alzheimer's, not my mom, that is running both our lives right now."
Seeking the right services
Finding relief from the disease, and its impact on Joanne, Tom, Robert and the rest of the Stowe family, proved problematic.
For example, PACE North is a center-based program on Garfield Avenue, with staff that Thomas Stowe said were welcoming and knowledgeable.
And at first, his mother agreed to participate, although she later became mistrustful and refused to go inside the building, he said.
The gerontologists who Agency on Aging staff suggested had lengthy wait times for new patients; his mother's trusted provider at Crystal Lake Clinic relocated; and Thomas Stowe said services Agency on Aging offered, like the call button, the wall bars and visits by a trained senior companion, didn't work for them.
Staff with Agency on Aging acknowledged this, too.
"Thanks for caring for your mom so much . . . I let (Catholic Social Services) know there wasn't a need for a Senior Companion," a registered nurse with the agency told Thomas Stowe in an email. "I let Guardian know you didn't need that emergency button anymore since your mom is never alone."
Agency on Aging staff, during the COVID-19 pandemic offered food, medications and paper supplies and Thomas Stowe said their emails to him provided a lifeline in 2019 and 2020.
But he said he had no idea there would be fees charged for this outreach, or that they weren't covered by his mother's Medicaid enrollment.
In 2022, the Stowe brothers received a letter from Nathan Piwowarski, an attorney with McCurdy, Wotila & Porteous, a Cadillac law firm, stating that MDHHS was filing a claim against their mother's estate.
Their initial reaction, they said, was bewilderment.
Piwowarski in the letter said his firm represented the Area Agency on Aging of Northwest Michigan, although the State of Michigan was the actual claimant.
"The AAANM has not made a claim against your mother's estate," Piwowarski said. "Instead, the State of Michigan is seeking to recoup certain contractual payments it has already made to the AAANM."
A personal representative, appointed by Grand Traverse County's Probate Court, was responsible for allowing or disallowing the claim, Piwowarski said.
Probate court records show a Traverse City attorney, Mattias Johnson, was appointed personal representative of the Joanne Stowe estate, and that he contacted the Stowes.
Correspondence shows Johnson told Thomas Stowe the only way to pay off the State of Michigan's claim was to sell the house.
"We have a realtor ready to stop by this week or early next week to prepare for the sale of the house," Johnson told Thomas Stowe, in a Jan. 15 letter.
Medicaid policy documents state two rules relevant to the Stowe's situation: Claimants can attach a lien to the house, instead of forcing a sale, and be paid when the house sells.
Disabled children of any age who live in a home subject to a Medicaid claim, can seek a waiver, which again would pay back Medicaid when the adult child, in this case Thomas, died or moved out of the house.
Thomas Stowe said he has, since 2010, received Social Security disability benefits after qualifying for them because of a previous injury.
Neither Johnson nor Piwowarski returned calls seeking comment, and court documents do not show why Johnson chose a sale rather than attaching a lien, as is allowed in some cases.
"We couldn't believe it," Robert Stowe, 58, said. "If we were rich and had money to hire a lawyer, we'd never even be here."
"Somebody needs to make a law that says a person getting Medicaid gets a statement sent to them with the billing," Robert Stowe said. "My mom should have been getting a monthly statement."
A family's equity
The Stowes said the family's financial security is tied up in equity in the Long Lake Township house and they cannot afford to hire an attorney. (Court-appointed attorneys are for criminal, not civil or probate court cases.)
Robert Stowe said he posted details of the family's ordeal on social media; Thomas Stowe called and wrote letters to MDHHS; filed complaints with the state's Inspector General's office — but has yet to hear back; and contacted Rep. Coffia's office.
Coffia said she met with Thomas and Robert Stowe, her office reviewed the Stowe's case, conducted research, confirmed Medicaid does offer a disability waiver option, and for six months has been advocating for the Stowes.
"We will continue to work very close with them to get answers," Coffia said. "We take nothing for granted and it is incredibly important to me to make sure Tom is able to stay in his family home."
Records show MDHHS on Feb. 23 granted Thomas Stowe the waiver.
It's unclear why Johnson, who at one point was removed from the case by Probate Court Judge Jennifer Whitten for what court records show was a missed filing deadline, went ahead with a March 12 hearing.
The hearing was to re-open the estate to probate and the Stowes said they believe the only reason to do that was so Johnson could list their family's house for sale.
Judge Whitten during the hearing asked Johnson about the waiver, he said he'd only just read it and wanted to consult with Piwowarski before filing a motion to dismiss.
Judge Whitten then adjourned the case for 30 days — until April 12, or until Johnson files a dismissal petition and the judge grants it.
"I still can't figure it out," Thomas Stowe said after the hearing of the state's effort to settle the $11,416.98 debt with the house sale.
"They're the ones that initiated this whole thing," he added. "I'm sure their lawyers, by now, cost more than the bill. If nothing else, maybe by talking to you we can help someone else."
