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Why Must Centenarian Resort to GoFundMe to Pay for Home Care?

By Harry S. Margolis

The Boston Globe reported that Juliet Bernstein, a Cape Cod resident who turned 108 years old last Friday, has raised $72,000 on GoFundMe to pay for her home care. Since the article ran, she has raised another $50,000.

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Ms. Bernstein has had to resort to this source of funding because neither Medicare or MassHealth will pay for her care and her children don’t have the means to contribute more than they have already. She has taken out home equity loans on her home and her oldest daughter, who is 80 years old herself, has taken out a reverse mortgage on her own home to help pay for her mother’s care.

Why Not MassHealth?

It’s not totally clear why Ms. Bernstein is ineligible for MassHealth, which does pay for some limited home care. She should be eligible unless she has savings that she has not yet spent down completely. It may be possible to stretch the GoFundMe money by qualifying for MassHealth to help pay for her care if Ms. Bernstein spends down whatever savings she may have left, but this will subject any remaining equity in the house to MassHealth estate recovery upon her death.

Online Debate Ensues

Ms. Bernstein’s situation raises a number of moral and policy questions. Are the GoFundMe donors in part simply contributing to the inheritance of Ms. Bernstein’s children by protecting her home from MassHealth estate recovery? Or would she have to move to a nursing home without this assistance, since MassHealth’s coverage of home care is only partial and it’s coverage of nursing home care is comprehensive?

The article engendered a lively debate in the comments section, including the following:

  • “The house on the Cape is worth at least $675,000. It’s in a trust to evade Medicaid recapture and probate. There is likely very substantial equity remaining in that house. Shame on her and her heirs for doing this. A donation to this Gofundme is essentially a donation to her heirs, to preserve her estate, so that more of it can be left to her heirs. She is NOT poor!” (I’m not sure how this writer has information about the house value and the trust, perhaps by looking her up on Zillow and checking the registry of deeds.)
  • “I’m reminded that the most important factor when it comes to retirement planning is how long you plan to live. Doubtful that anyone picks 108, no surprise that her financial situation is strained.”
  • “I am sure that studies have been conducted but it seems in the long run, home health care would be cheaper than the cost of a nursing home. Medicare needs to be revamped for the needs of today and tomorrow, not 50 or 75 years ago.”
  • “24/7 home health care and the maintenance of a 3 bedroom house is not cheaper than assisted living. Home health aides deserve to make a living wage. How does a person on a limited budget fund another person’s employment?”
  • “‘Home care’ can encompass a wide variety of services. Bathing, dressing? Meal prep, house cleaning, shopping? Have to draw the line somewhere, would be a total budget-buster.”
  • “For her sake, I hope she can find a way to live out her days the ways she wants. However, I do think some reasonable limits on Medicare/Medicaid are necessary here. It’s just not possible to let everyone live with 24 hour home care. By my estimate, 24 hour care would cost at least $175,000/year ($20/hour x 8,760 hours that make up a year). That’s before any more skilled care, and doctor’s visits, etc. Nursing homes do have their place.”
  • “As a medical social worker and geriatric care manager, I spent decades of my career helping folks stay safe and comfortable at home using federal medicaid waiver funding in CT. (MA has a similar program but not as forward thinking or generous.)”

As you can see, Ms. Bernstein’s situation, which other than her advanced age, is not that different from that of tens of thousands of other seniors in Massachusetts and millions nationwide, raises a lot of difficult questions. How much is care a personal responsibility and how much should the cost be covered by the public? How much should this depend on the individual’s financial or family situation? Should people be forced to spend down every last cent before getting assistance from other taxpayers? Should they be able to choose where they receive care, at home or in an institution? Or should that be solely based on the cost to the state?

Finding the right balance between personal and public responsibility and the right level of self-determination requires a public conversation, one that we really have not had to date. Instead, MassHealth does the best it can to limit eligibility to those who have spent down all their assets and to provide the minimum amount of care it can, though in terms of home and assisted living care, it covers more than it did in the past.

Why Not MassHealth for All?

I’d propose that every Massachusetts resident be automatically eligible for MassHealth. This would cost the taxpayers more. But it would prevent people from taking part in complicated machinations to become eligible. Many more people would be able to stay at home for longer if they could spread out the cost between MassHealth and their own savings. Any extra cost could be covered by charging a fee to employers who don’t provide health insurance to their employees. Ultimately, many employers might switch from providing private health insurance to simply paying the fee, lowering their ultimate cost and the cost of health care in general.

 

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