Bill Would Allow Spouses To Qualify For Personal Care Pay

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.”

The Morrises got divorced, mainly so she could get paid to take care of him.

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.

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  • Jen

    My mother is disabled and my father has stuck with her and her disability for 25 years. My parents have discussed divorce, but my mother is too mentally dependant on my father, and my father doesn’t want to give up helping her. My family has been poor ever since her disability began. I was once her PCA but it was too stressful for me. My dad is practically her PCA by allocating her medications, scheduling her doctor appointments and helping her shower etc. She has a regular paid PCA right now through the program, and we love her to death. However, it would be better if my dad could get the compensation since he already cannot take a full time job because she needs him home most of the time. I feel that this bill would help a lot of families because it would mean that a spouse is not left to chose between making money for the household and proper care of their significant other. We don’t like making families chose between medication and food for their kids, why should we require spouses with disabled partners to do the same?

  • Christina ONeill

    I can understand the concern about possible fraud but spousal caregivers are often curtailing or ceasing gainful employment to care for spouses. I am in that situation and it involves what can be considerable downstream loss of earnings for the caregiver. This should be taken into account; $13 an hour is a drop in the bucket for many of us but is better than nothing.

  • mumtothree

    There’s a similar anomaly in the Adult Family Care regulations, under which a developmentally disabled adult child can live with his/her parents, so long as not more than one of them is the legal guardian. The state is not funding group home placements unless the parents are deceased, but MassHealth will pay and provide respite for a family caregiver, including a parent. So if Mom and Dad are co-guardians, they are ineligible caregivers. If only one of them is legal guardian, they qualify. Many parents got co-guardianship, thinking that if one of them got hit by a bus, the guardianship would continue uninterrupted. Seemed like a good idea at the time!

  • Natasha

    I have been working for an AFC agency for over 4 years and everytime I have met with e referral source or family, they have asked me if we can pay spouses. Spouses are the most traditional of Caregiver relationships. It would be a step in the right direction to be able to financially and emotionally support them.

  • yvonnedecelis

    I know that I would need to be paid to take care of my spouse and I sure don’t think I should have to divorce him to do it! It makes no sense that a stranger, a sister, an uncle or most any other family member, but not I can be paid to take care of the man I love!

  • amyrippy

    Yes, changing the care law to include spouses to be paid for homecare is very important.

  • mmcmurray

    This is so important. If something happened to my spouse and we lost his income are we also expected to loose my income to so that I could stay home to care for him?

  • road.rep

    Paying a spouse sounds like a good idea, but I’m not sure we can afford it, and the level of fraud will likely skyrocket. How do private insurance providers handle this issue. I didn’t see that mentioned in the article. Maybe they can provide us with some best practices here. There must be a better way to do this.

  • Lori Earl

    Yes, being able to choose your spouse as your pca is a good idea.

  • Marguerite

    Although I agree with the “Calvinist” view of caring for your spouse through sickness and in health, the reality is that in this economy, doing it without compensation that might be available is impractical. As far as fraud, it is committed everyday in this program and not always by family members. Maybe I am being naive but I think if the caregiver is the spouse, there would be less fraud. I would especially like to see spouses of those with dementia and Alzheimer’s be able to be the PCA. Many times the spouse is the only one that the consumer trusts or responds to.

  • Glenda

    I agree with Marguerite that the risk of fraud would be less if we pay a spouse to be a PCA for a loved one. It’s a shame that this fear may prevent spouses from being supported in this role. The small payment provided to a spouse to care for the other as their PCA is a small percentage of the cost of facility care. Such an option would support spouses and their families who are facing many physical, medical, and psychological challenges related to the loss of health, independence, and family. Supporting spouses as PCA caregivers would be an excellent way to improve the physical and mental health of individuals, their spouses and families; AND contain costs while improving quality of life. Spouses as PCA caregivers would translate to healthier communities in Massachusetts. A change in the law can’t come soon enough.

  • Pam

    Excellent article! Thank you for putting it out there. Startling and unfortunate situation for many like the Morris family. Many people already have PCA’s so why not shift the payment to the spouse in the home? I think it would decrease stress levels if this could be done. I hope this bill passes soon.

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