Opinion: Caregivers overlooked by Congress during $6 trillion budget

TURLOCK, Calif., March 11, 2021 /PRNewswire/ -- The following is a statement from Jeffrey R. Lewis:

Now that the $1.9 trillion American Relief Plan has been signed into law by President Biden, the U.S. government has authorized expenditures of $6 trillion during the last calendar year in effort to provide relief for those most affected by the Coronavirus pandemic.

Six trillion. It's a number that makes little sense to the human mind. But look at it this way: If that $6 trillion were divvied up equally, Uncle Sam could write a $40,000 check to every taxpayer.

There are many positives associated with the package: direct relief payments, extended unemployment benefits, housing assistance, the child tax credit and, of course, aid to state and local governments.

But while Congress embarked on the largest spending spree in this history of this nation, not one dime was earmarked for caregivers, those brave women and men who continue to work – or leave the workforce altogether – while taking care of a child, spouse, parent or parents full-time.

Too often, these caregivers fall into financial instability by giving up income, by not contributing to Social Security or retirement plans. For caregivers, there are no paid sick days or vacation days or holidays, which imperils their financial, emotional, and physical health.

According to AARP, more than 1 in 5 adults in the United States – 53 million – serve as unpaid caregivers to an ill or disabled relative. And the Family Caregiver Alliance estimates that as many as 68 percent of these caregivers are women.

And here's the loose thread that could unravel the whole tapestry: unpaid caregiving is affecting women disproportionately and increasing the reality that poverty in old age has a distinctly female face.

Women who leave the workforce in their 40s and 50s – likely far earlier than planned – are doing so at the height of their earning potential. This can affect the heft of their Social Security. It also takes women out of employee-sponsored retirement plans.  And it increases their financial dependence on their spouse or partner.

The U.S. Census Bureau says nearly 6 million grandparents live with grandchildren in the same dwelling and a full 40 percent of those grandparents act as caregivers. Again, females dominate this role, with nearly two thirds of these grandparent-caregivers being women. And it's not just adults. There are more than 1 million caregivers nationwide between the ages of 8 and 18, taking care of siblings or parents.

This is important work. What gets lost in the shuffle, however, is that this is mostly full-time work.

Stanislaus County resident Sandy Yoppini is a full-time caregiver for her 27-year-old daughter Mariah, who has Down Syndrome. Mariah also suffers from seizures and sleep apnea and needs around-the-clock care.

Sandy and her husband, Steve, and their adult son Matthew work as a team to provide for Mariah, but most duties fall to Sandy, who left the workforce 20 years ago to care for her daughter.

"I don't know how single parents are doing it," said Sandy. "If I wasn't home, I don't know how we'd do this. I really don't."

In January 2018, Congress passed, and President Trump signed into law the Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act, which requires the Department of Health and Human Services to develop and maintain a strategy to support unpaid caregivers.

The RAISE advisory council had its first meeting in August 2019, some 20 months after the passage of the act.

This glacial pace is unacceptable. Some 53 million adult caregivers have put their health and financial security at risk to take care of some 53 million people who require in-home assistance, often full time. That's nearly 110 million people – about the population of France and Spain combined.

Six trillion dollars, and not a dime for this selfless, silent constituency.

Caregivers are often sandwiched between children, grandchildren, and aging parents.  They live in economic fragility.

Congress could do better if it only asked families like Yoppini's how.  Any elected official can talk about a problem; few have the courage to create the solution.

Jeffrey Lewis is President and CEO of Legacy Health Endowment in Turlock, Calif. The opinions expressed are his own.

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SOURCE Jeffrey R. Lewis