I am one of the nation’s 34 million family caregivers. The services we provide for free are valued at more than $520 billion, according to the Rand Corp. That’s billion with a B ― a staggering amount that’s almost as much as the United States had budgeted for the nation’s defense in 2016.
Here are some of the things that my fellow caregivers and I do and don’t get paid for: We empty urine bags, colostomy bags, change soiled diapers, clean open ports, provide bathing and toilet assistance, cook special dietary meals, give injections, test blood sugar, administer medications, keep track of insurance billing, followup with doctors and a few thousand other things I am too exhausted to name. Some of us also are still raising children and many have full-time jobs. Many of us can’t remember the last time we had an hour to ourselves, met a friend for drinks, went to a movie or didn’t gag when our patients soiled the bed. Sitting in traffic becomes “me” time. Strolling through the supermarket aisles alone is as good as a spa day.
Which is why I believe that family caregivers need a union. We need to stand collectively and demand that somebody listen to us. Here’s some of what we should be negotiating for:
1. Pay us.
One-third of family caregivers spend more than 30 hours per week caregiving, which is damn close to it being a full-time job.
Sixty percent of caregivers say that their caregiving duties have had a negative effect on their real job. Medicare offers no compensation for family caregivers, although the agency so very thoughtfully urges us to “take care of yourself.” Of course they want us to stay healthy. Replacing us will absolutely cost more than zero, which is what we cost them.
Medicaid does have a smattering of programs that pay family caregivers who care for low-income seniors. If the patient is eligible for Medicaid, its Cash and Counseling program is available in some states. A few other states have similar programs ― but again, just for low-income seniors. If you are middle class, there is really nothing for you unless your patient has long-term care insurance that includes a provision for in-home care coverage. Only 10 percent of the elderly even have a long-term care policy and the “pay your family caregiver” part isn’t universal.
Truth is, these programs barely touch the surface. Family caregivers are the only thing that stands between our patients and a much more expensive nursing home or assisted care facility that eventually winds up costing Medicaid. At the very least, we are cheaper. So pay us.
2. Reimburse us for our caregiving expenses.
Forty-six percent of caregivers spend more than $5,000 each year out of pocket to provide care for a loved one, says Caring.com. That’s 10 percent of the median family income in the U.S. and not small change. And it can go much higher. Five percent of caregivers shell out between $30,000 and $49,000 per year and another seven percent spend more than $50,000 a year out-of-pocket on caregiving.
According to the 2015 GenWorth Cost of Care study, hiring a home health aide for 44 hours per week costs $45,760 per year. A bed in an assisted living facility can cost $43,200 annually and a semi-private room at a nursing home exceeds $80,000. Medicare and private insurance do not cover things like incontinence supplies.
Hillary Clinton has proposed a $6,000 tax credit toward costs associated with providing long-term care to aging parents and grandparents.
3. Give us legal protections in the workplace.
More than half of all family caregivers have had to change their work schedules to accommodate caregiving, found the GenWorth Cost of Care study. Thirty percent have had to leave early or get to work late and 17 percent said they missed a significant amount of work.
What’s to stop the boss from letting a caregiver go? The practice of treating employees with caregiving responsibilities less favorably than other employees is called Family Responsibilities Discrimination. AARP studied FRD and found that with very few exceptions, most federal and state statutes do not expressly prohibit this form of discrimination. There are no laws to protect working caregivers as a specific group or class from discrimination. FRD-related claims in the workplace have been framed from other legal theories in federal and state law—for example, as sex discrimination, discrimination based on association with a person with a disability, or a violation of state or federal family and medical leave laws. Yet incidents like these real-life examples persist:
An employee was fired when he asked for leave to care for his chronically ill father. Another was told that his employer had “paid enough” for his ailing wife already and terminated when he refused to take his wife off of the employer’s insurance plan. An employee was denied leave when her employer insisted that it was not her responsibility to care for her ailing mother since her father was still alive. Claims of FRD in eldercare include denial of leave and retaliation for taking leave.
The number of FRD lawsuits grew from about 444 cases in 1989 to about 2,207 cases in 2008, an increase of nearly 400 percent over the two decades, said AARP. The largest individual jury verdict in an FRD case ($11.65 million) involved a hospital maintenance worker, Chris Schultz, who was fired while caring for his father with Alzheimer’s disease and mother with congestive heart problems and severe diabetes. Schultz asked for an intermittent leave, to which he was entitled under the federal Family and Medical Leave Act (FMLA). While on leave, his supervisor imposed a new quota system that was impossible for Schultz to meet. As a result, the former hospital employee of the year was fired for poor performance after 26 years.
4. Make up what we lose in Social Security.
According to the Women’s Institute for a Secure Retirement, 70 percent of family caregivers cut back on their work schedules to accommodate caregiving responsibilities and lose $303,880 in lost wages, Social Security benefits and private pensions over their lifetimes.
WISER notes that because of their reduced hours, caregivers may miss opportunities for matching 401(K) contributions as well as promotions at work, further hampering their own savings plans and earnings.
Sometimes they get slammed in health care too. Employer health plans may not cover part-time employees.
At the very least, financial credit should be given toward Social Security earnings.
5. Get us help.
Caregivers need relief ― actual, honest-to-goodness relief. We need other people to take our patients to their medical appointments, help them with their personal hygiene, deliver a few prepared meals. We need safe places where our patients can spend a few hours supervised while we go to work or take a break.
6. Just like we do our military, give family caregivers financial rewards for their service to a grateful nation.
Some midlife and older individuals quit their jobs to care for a parent, and then try to re-enter the work force later on. People who disrupt their careers for full-time caregiving responsibilities can lose career momentum. In the same vein as GI benefits to our returning soldiers, why not offer family caregivers below-market rate loans, tuition breaks to get the skills they need, and hiring preferences― the same as we do our military.
And if you elect me union president, I’d also lobby for free medical care to quell the number of caregivers who die before their patients. Because yeah, this is the toughest job you are ever going to be called upon to do.