Hundreds of thousands of people on MassHealth could be affected by a bill lawmakers on Beacon Hill are considering this week that involves something known as MassHealth estate recovery .

    MassHealth, the state's Medicaid program, provides health coverage primarily for people with low incomes. But once certain members die, MassHealth can collect money from their estates to pay itself back. It's an often-overlooked provision that's been referred to as a " well-kept " or " dark" secret of Medicaid.

    Katherine Lollis said she didn't know anything about it. Her late mother, Eleanor Lollis, was impoverished and got health coverage through MassHealth for many years.

    A framed photograph of the late Eleanor Lollis inside the home she and her daughter, Katherine, shared together. (Lynn Jolicoeur/WBUR)

    She said her mother's chronic health problems included heart disease, diabetes, anxiety and depression, and that over about a decade, her mom had five heart attacks and two strokes.

    Over those years, the younger Lollis took care of her mother, regularly accompanying her on emergency trips in the middle of the night to a hospital in downtown Springfield. She'd often wait until her mother got a bed before walking home to sleep a couple hours before heading to school.

    The pair always lived together, and for most of Katherine's life they resided in her late grandparents' home. Then, her mother sold that home and bought a small condo in West Springfield for just over $100,000.

    Shortly after they moved in 2016, Eleanor Lollis died from a heart attack. She was 67.

    A few months later, as Katherine Lollis grieved the loss of her mother, she got another shock. She received a letter MassHealth sent to the attorney for her mother's estate. It explained that MassHealth was trying to recover nearly $36,000 it had paid for her mother's health care. And, she said, the state wanted payment in "one lump sum," and told her if she failed to pay up, a lien would be placed on her home.

    "It kind of felt very much like someone coming to bust down my door and kind of just try to take things from me," she recalled. "It was pretty scary."

    Massachusetts goes further than Medicaid requires

    Medicaid is run by states, but receives federal funding and has to follow federal rules.

    Almost 30 years ago, the U.S. government mandated that state Medicaid programs recover money paid for nursing home and other long-term care costs enrollees incurred after they turned 55. Massachusetts does that by filing claims against the estates of members who've died, but only if their estates are being handled in probate court. An estate ends up in probate if there are unresolved issues surrounding a person's will, property titles, beneficiaries, creditors or taxes.

    The federal government gives states the option to go even further with estate recovery, recovering costs for additional Medicaid services. About half of states do .

    Massachusetts does, and takes it further than others, according to advocates. State law allows MassHealth to try to collect everything it paid for members' health care after they turned 55. 

    "Medicaid estate recovery is for correctly paid benefits ... That's part of what's so perverse about this. You're entitled to the benefit ... but, it's a loan," said Vicky Pulos, a senior health attorney at the Massachusetts Law Reform Institute. "It penalizes poor people for doing just what the state of Massachusetts wants them to do, which is enroll in affordable coverage."

    Pulos said most people on MassHealth will not be subject to estate recovery, because most of them don't have estates that end up in probate court; and the majority of Medicaid recipients have modest assets, if any.

    WBUR asked the state's Executive Office of Health and Human Services (EOHHS) why Massachusetts has gone further than other states in conducting estate recovery. It did not give a response and would not provide someone for an interview.

    According to the state's website, estate recovery is used "to supplement funds available for medical assistance programs and limit the tax burden on citizens of the Commonwealth caused by rising medical costs." It says fund are returned to state and federal medical programs "to help provide assistance to those in need."

    Pulos and other advocates are pushing for a change in state law to restrict MassHealth estate recovery. A  bill that's been pending since February  would require the state to do only the minimum estate recovery required by federal law. Again, that's recouping costs for long-term care services, including nursing home and in-home care.

    Legislators filed a similar amendment to the House and Senate versions of the pending economic development and tax relief bill. The amendment passed as part of the Senate's version of the bill. The branches must agree to a final version of the legislation before the end of the session, scheduled for July 31.

    A bill was also introduced in Congress earlier this year to end the federal Medicaid rule requiring estate recovery.

    For now, in Massachusetts, MassHealth has implemented some  changes to estate recovery. Last year, it made its first changes to the policy in almost two decades. It now sends a notice to MassHealth members when they turn 55, notifying them about estate recovery. It expanded the circumstances under which people can apply for hardship waivers so their loved ones' estates can be exempted from estate recovery, and it stopped pursuing recovery on estates valued at less than $25,000. As a result, it filed fewer estate recovery claims: 1,888 in fiscal year 2021, compared to 2,545 the previous year, EOHHS said.

    Before those policy changes, the state brought in about $40 million per year from MassHealth estate recovery, according to the agency. About half went to the state's general fund, while the rest paid the federal government back some of its Medicaid funds. That means the state netted about $20 million in recent years from estate recovery.

    Advocates including Pulos argue that the amount recovered by going after people in very difficult situations is of strikingly small benefit to the state.

    She cited testimony by a MassHealth official at a hearing on the regulation changes last year, in which the official suggested MassHealth would soon recover about $8 million in net revenue per year — a 59% decrease.

    MassHealth has 2.2 million enrollees, according to the agency.

    With a budget in the billions of dollars, Pulos said, "the MassHealth estate recovery — Medicaid estate recovery, generally, nationwide — is a high-pain, low-return activity."

    Fearing future estate recovery

    The pain can be both financial and emotional for MassHealth recipients. People like Charlie Carr, who says he has been on Medicaid most of his life.

    "When I was 14, I took a bus from Everett to Revere Beach to join my friends, who were swimming, and [I] dove off the wall and the water was too shallow," Carr said. He injured his spinal cord, leaving him instantly paralyzed from the shoulders down.

    Charlie Carr uses a mouth wand to direct a trackball to control his computer. (Jesse Costa/WBUR)

    Carr is about to turn 69. He's on a MassHealth program for people with disabilities, called CommonHealth . It pays for his personal care attendants, some of his medical equipment and certain prescriptions. To be on the plan, he's required to work. He has to pay a monthly premium of more than $400, he said. And he has to have private insurance to cover the rest of his health care. Still, the state can file a claim to get its money back, and at least some of that money would come from the colonial-style home where he and his wife raised a family.

    Carr checked with MassHealth and found out the tab he's run up since he turned 55 is already about $500,000. And the meter is still running. So the thought of what could happen when he and his wife die weighs on him.

    "It goes beyond the draconian sort of punitive money aspect, and it gets into how it messes with people's minds," said Carr, who has two adult kids and two grandchildren. "I want to give this house to my children. ... You know, we don't live a lavish lifestyle. [This is] a middle-class home that we paid for. I just worry that I'm going to lose everything, and my kids — they're not going to benefit from it."

    Charlie Carr moves through the living room of his Methuen home. (Jesse Costa/WBUR)

    Carr is consulting attorneys to try to put his assets in a trust that might protect them from estate recovery.

    "But," he asked, "how many people who are on Medicaid ... can afford to go to an attorney to develop a trust, which is $3,000 to $5,000?"

    Attorney Clarence Richardson said not a lot of families can. Richardson directs the Massachusetts chapter of the National Association of Elder Law Attorneys. He said in many cases, to pay MassHealth estate recovery claims, people are forced to sell a house or borrow against the equity in a home that was left to them by a loved one who was on MassHealth.

    "It's challenging, because that equity in their home is really the only thing that they have to pass down to those future generations," Richardson said. "And so if that is the only wealth that you have, there's no way to sort of build that generational wealth."

    Katherine Lollis found out too late that she could have applied to dispute the estate recovery claim, to help her hold onto the condo. She said another family member received the original notice and didn't tell her.

    As a part of the rule changes instituted last year, MassHealth grants a hardship waiver to an heir who cared for a MassHealth member while living in the member's home for at least two years before the person died.

    That change came too late for Lollis. But she said after learning of the claim on her mother's estate, she asked a MassHealth estate recovery official to consider the years she cared for her mother in both of their homes. She said her plea was disregarded and "felt like a slap in the face."

    "They basically were like, 'You didn't actually take care of her for that long.' ... It felt, like, callous," Lollis said. 'They know that I took care of her on that level, and that I do deserve this house."

    MassHealth would not comment on the Lollis case.

    The claim Lollis faces was reduced to $26,000 as a result of a larger legal case against MassHealth. In 2017, it placed a lien on the condo, according to Lollis' attorney, Andrew Cohen of Health Law Advocates.

    Cohen said he's arguing to MassHealth that Lollis should get a hardship waiver based on her disability. Like her mother, she has anxiety and depression, as well as a chronic, debilitating physical illness. She, too, can't work and is on MassHealth.

    She said if estate recovery remains in effect, she hopes she can somehow get off the government-sponsored health insurance before she turns 55. She doesn't want to leave anyone she loves having to pay the state back for her care.

    Does MassHealth have to be paid back?
    Federal and state Medicaid law requires MassHealth to recover assets from the estates of certain MassHealth members after their death. This process is called ā€œestate recovery.ā€ The assets are used to reimburse (pay back) the state for the cost of care that MassHealth paid for the member. more
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