MOLINE, Illinois-- A Moline family says they're worried the State of Illinois is going to take their mother's home, all because she used Medicaid to cover her at-home care plan.
Michelle Lindberg contacted WQAD News 8 in July 2018 just days after finding out the state could take her mother Rachel Lindberg's house after she passed away.
"I don't want mom to lose this house, not just because I want to live here, but because it's something that Jeff and I... it means something to us," Michelle said.
According to federal law, all states, not just Illinois, are required to try and recover Medicaid expenses from a recipient's estate after they die. This can include someone's house. This rule applies to Medicaid recipients age 55 and older.
Now, Michelle and her brother, Jeff, are waiting to find out what will happen to the family house. Rachel passed away in July, a few weeks after the family found out about this process called Medicaid Estate Recovery.
"I know from just talking to [Mom] that this was just the point where she gave up and said, 'I'm done. It's time for me to go,'" Jeff Lindberg explained.
News 8 met Rachel before she passed away. She had just found out about Medicaid Estate Recovery.
"I feel cheated," Rachel said. "I really feel cheated because I would never ever... I would've done without the help," she said.
Rachel said she first signed up for Medicaid to cover her in-home care about five years ago. She signed up with Alternatives for the Older Adult to create an at-home care plan for help with cleaning and running errands.
Rachel said she didn't find out about Medicaid Estate Recovery until a representative from Alternatives told her during a home visit.
"They absolutely never did tell me audibly," Rachel said. "And if it was in one of those brochures, that's ridiculous. I don't think most people read those brochures."
The program director at Alternatives for the Older Adult said their representatives are supposed to walk through Medicaid Estate Recovery before people sign up for services. She said that was done with the Lindbergs.
"I have reviewed the file, and all documentation does indicate that Medicaid Estate Recovery was discussed and was agree to," Program Director Brycie Wilson said.
A Moline attorney who's knowledgeable about elder law in Moline said people don't even have to consent or acknowledge Medicaid Estate Recovery when they sign up because it's already written in the law.
"Ignorance is no excuse of the law," said Michael Galvin, an attorney with VanDerGinst Law. "You're expected to know that."
He said people sign up for Medicaid all the time and don't even know they could lose their house.
Galvin said states vary wildly when it comes time to actually recoup money from people's estates. He said they're sometimes very aggressive, but "sometimes they don't seem to notice."
The Lindbergs are now facing that uncertain reality. The state can put a lien on the house, which indicates the state is owed money that it can recover by selling the house.
Jeff said his mother received $30,000-$40,000 worth of care through Medicaid. He said after they pay off his mother's other debts, there won't be much left to pay back Medicaid expenses. He said the state would have to take the house to get back that money.
"Now with this whole situation up in the air, I don't even know how long it's going to be if we know if Shelly [Michelle] can stay here," Jeff said.
There is one sliver of hope for the Lindbergs. There are exceptions to Medicaid Estate Recover. States can't recover expenses from someone's estate if they're survived by a spouse, a child under age 21, or blind or disabled children of any age.
States may not recover from the estate of a deceased Medicaid enrollee who is survived by a spouse, child under age 21, or blind or disabled child of any age. States are also required to establish procedures for waiving estate recovery when recovery would cause an undue hardship. Michelle is legally blind.
The Lindbergs now want to warn people about this seemingly little-known part of Medicaid.
"It is devastating our family and please don't let it happen to you," Michelle said. "You're going to get in over your head. And if you don't want to lose your house, this is not the program for you."