BOSTON — If your spouse were disabled, or had a debilitating disease such as Alzheimer’s, would you want to be paid to care for them at home? Under state law, residents who qualify for MassHealth benefits can hire a personal care attendant, or PCA, to help with daily tasks. They can choose a stranger, a sister, an uncle or most any other family member, but not their spouse. A bill in the Legislature would change that.
A Divorce Decision
When Terri and Tom Morris met in their 20s, she was a licensed nurse at a Boston hospital and he was a quadriplegic in her care. He’d broken his neck in a water skiing accident when he was in his teens.
“It was just kind of love at first sight,” Terri Morris recalled. “We met in July, we were married in October.”
In the early years, much of Tom’s home care was provided by his stepfather. But he passed away in 1999 and Tom and Terri made an extraordinary decision: They got divorced, mainly so she could get paid to take care of him.
“We had to take that step and go against our faith, but because we were together still we knew that in the eyes of God we were still married,” she explained. “For us the marriage contract was real, and only a piece of paper, but for the state, for the legal system, that piece of paper meant everything.”
There were some Social Security issues that a divorce made easier. But more important to the couple was a state program that now pays almost $13 an hour to help people like Tom with daily tasks — cooking, shopping, showering, even administering medication. But, under the MassHealth Personal Care Attendant Program, eligible state residents can’t hire their spouses.
“I would gladly do it without money,” Terri Morris said. “But this world doesn’t function without money. I’d rather be a contributing member of society, paying my taxes. And the only way I could pay my taxes and take care of Tom was to divorce. So, how is that right? I don’t see where that’s right.”
Cases For, Against Legislation
“It goes back to sort of a Calvinist view of the world that when you married this person 20 years ago or 15 years ago you said you’d take care of this person in sickness and in health, OK now do it,” said Al Norman, executive director of Mass Home Care, which advocates for programs that help seniors and disabled people stay at home and out of nursing homes or other institutions.
Norman notes that state law requires those on MassHealth must be cared for in the least restrictive setting possible. A pending bill that would allow spouses to be paid for providing care, he says, would further that goal.
“For a lot of people that are disabled and need help at home, the one person who knows them best, who provides the best care, is their spouse,” he said. “And we have to pass them over.”
The bar on paying spouses for caregiving is not solely based on cultural expectations that couples should help each other for love, not money. Studies of other states by the Robert Wood Johnson Foundation show that officials worry spouses would “come out of the woodwork” to get compensated for care they’d otherwise provide for free. And fraud could be an issue, too.
Ken Smith, who administers Massachusetts’ personal care network, says there’s evidence some people fudge PCA timesheets to benefit a relative. It’s a $470 million system that pays for more than 30,000 PCAs in Massachusetts, using a combination of state and federal Medicaid funds.
Smith said it’s likely that there’s a higher risk of fraud when relatives are in the mix. “Yes, you can definitely see that there could be more opportunity there for fraud and abuse.”
And the state auditor has detailed several such cases in recent years. Still, Smith says overall fraud reported in the PCA system — by relatives or others — is very low. And he adds that a new electronic timesheet system to be implemented next month should cut it down further.
Smith declined to weigh in on the proposal to reverse the ban on compensating spouse PCAs. In a brief interview, his boss, Gov. Deval Patrick, did voice some support for the change.
“It’s another good thing to do,” Patrick said. “And there are a lot of pressure on revenues. So I think that as a lot of good ideas come up, folks are going to have to deal with the question of revenues.”
Advocates argue that the cost is the same, whether it’s a spouse or a stranger providing the care. And the Robert Wood Johnson Foundation’s research shows that in 15 other states that allow some form of spouse compensation, results are good, while home care is always cheaper than institutional care.
Terri Morris says the administration and lawmakers should make Massachusetts the next state on the list.
“Nurses and patients do fall in love and get married and want to live happily ever after caring for each other,” Terri Morris said. “I think the government needs to recognize that they can’t just take that out of the equation and make people conform in order to receive benefits that are vital to survival.”
That change would come too late for Terri Morris. Her partner, Tom, died in May at 61 of pneumonia and other complications. But she knows some engaged couples who are putting off marriage so they can stay eligible for the PCA program. She also knows a married couple who might, as she did, opt for divorce — at least on paper.