There are two words missing in the 100-plus pages of the American Health Care Act, which narrowly passed the House on Thursday without a single Democratic vote: “family caregivers.”
It’s a shame, because the trickle-down effects of the bill ― should it pass the Senate ― would swell the ranks of the nation’s 43.5 million unpaid and untrained family members who sacrifice portions of their own lives and livelihoods to spare their loved ones being kicked to the curb.
Many aspects of the Obamacare repeal uniquely target older Americans. But there’s one in particular that threatens to envelop us in a broad swath of misery: the change to how states handle Medicaid benefits.
In a nutshell, Medicaid ― not Medicare ― pays for nursing home stays. In order to qualify for Medicaid, the patient must spend down his or her assets to just this side of zero, and then contribute whatever income they have, like Social Security, to the nursing home for payment.
Medicaid is the primary support for 65 percent of nursing home residents, most of whom enter as private pay patients until they run out of money. It is the safety net for formerly middle-income people who worked hard all their lives and have spent their savings on long-term care. By the time Medicaid kicks in, these people ― your parents and loved ones ― have essentially been wiped out financially by old age and/or illness. Medicaid is the last resort, the final stop.
Medicaid money isn’t spent where you think it is
When you think of Medicaid, you think of kids and families living in poverty, don’t you? Medicaid actually spends more than five times as much on each senior in long-term care as it does on each poor child.
Under Obamacare, it didn’t matter. There was enough pie for everyone to get a slice. Everyone who was eligible and qualified for Medicaid ― senior, adult or kid ― was guaranteed by the federal government to get it.
Under Trumpcare, that would change. States would decide who gets their health care needs met by Medicaid, and the total pot would shrink by $880 billion by 2026. Would your state choose to treat the 90-year-old stroke victim in need of rehab, or the kid with cancer who needs expensive drugs?
It doesn’t take a crystal ball to predict where this would lead: More older people who can’t afford assisted living or nursing homes would turn to their families for help.
And how would that work out? Well, consider this:
Most caregivers today are walking on thin ice without so much as legal protection from getting fired if they miss too much work. They juggle families, full-time jobs, and caregiving tasks that include dealing with doctors and insurance, managing medications, bathing, feeding, dressing, and helping their patients go to the bathroom. They have no medical training, but are expected to clean ports, empty urine bags, change bedding with the patient on the bed, cook special diets, change wound dressings, change diapers, and test blood sugar levels, delivering insulin shots if necessary.
The unpaid services provided by America’s family caregivers were valued at $500 billion in 2014, according to a Rand report.
That’s just the tip of the iceberg
When caregiving becomes overwhelming, the family caregiver often starts to miss time at work or switches to part-time hours ― or quits altogether. They can also be easily fired for taking time off to get Mom to the doctor’s.
The federal Family and Medical Leave Act doesn’t cover 40 percent of the nation’s workforce. Employees can take up to 12 weeks of unpaid time off to care for certain family members, but this only applies to people with a job in federal, state or local government or at a private company with more than 50 employees. Family relationships ineligible for leave include sons- and daughters-in-law, stepchildren, grandchildren, siblings, nieces, and nephews. Seventeen percent of caregivers told Rand that they didn’t take leave because they feared losing their jobs.
For those in their 50s or older who simply left the workplace to caregive, the Rand report says that they lost wages and benefits averaging $303,880 over their lifetime. A lower earning history also means reduced Social Security payments for caregivers if and when they become eligible.
Meanwhile, family caregivers tend to ignore their own health because they are too busy caring for a loved one. Dementia caregivers seem to suffer the most, which may explain why a relatively high percentage of them predecease their patients.
Last year, the National Academies of Science, Engineering, and Medicine took a sobering look at the state of family caregiving in the U.S., and found that caregivers of elderly family members devoted 253 hours a month to the task — almost the equivalent of two full-time jobs. Five years is the median duration that family members care for older adults with high needs ― and that’s one heck of a long time to live in purgatory.
Public policy already lags behind today’s caregiving reality. The AHCA’s lasting legacy would just be to make things worse.