Ways and Means Committee members hear about difficulties faced by family caregivers and how federal/state government agencies, employers, and others can help.
A congressional hearing last week highlighted the challenges faced by family caregivers and addressed how government programs and employers’ support might help. “Caring for Aging Americans,” held before the House Ways and Means Committee, featured caregivers, patient/elder advocates, industry leaders, and others. Read on for key insights from those who care for older Americans, both at home and in post-acute and long-term care (PALTC) facilities.
Organizations with employees who are also caregivers have much to learn from the words of Kristina Brown, a fourth-year medical student and caregiver. She talked about the hard choices families often must make when a loved one, like her mother (who had multiple sclerosis), becomes seriously ill or otherwise incapacitated. She observed that the cost of a long-term care facility could exceed $10,000 a month, with home care being only slightly more affordable. As a result, she had to take on the caregiving burden herself. She said, “These strains can take a toll on caregivers’ health.”
According to AARP’s Public Policy Institute, 60% of people caring for an older relative or friend also have full- or part-time jobs; and more than half of caregivers report exercising less, eating poorly, and not seeing their own doctors as needed. Brown said, “From my own experience, I can say that I routinely missed meals and sleep…, and that I strove to hide my exhaustion, weight loss, and social isolation from the people around me.” In recent years, she said, “I’ve taken out loans to keep up with mortgage payments.” For additional income, she worked shifts in a hospital radiology department. Eventually, she said, her family ran out of options. She could sell her family home to qualify for state assistance or drop out of medical school and become a full-time caregiver.
Brown talked about the employment challenges of caregivers. She observed that millennial caregivers are more likely than previous generations to be passed over for promotions, forced to reduce their job responsibilities, or even get fired. “Just a few years of caregiving early in life creates cumulative financial setbacks for women, making them less likely to have retirement savings and more likely to require government assistance,” she said.
The Family and Medical Leave Act, which allows for 12 weeks of leave each year, is inadequate, Brown suggested. She said, “While many workplaces have paid parental leave, and educational institutions offer stipends for students with children, such policies exclude other kinds of caregivers. Programs such as respite care and adult day care often have limited funds or come with out-of-pocket costs or age requirements.”
In his testimony, Robert Blancato, national coordinator of Elder Justice Coalition, suggested, “We must maintain a strong Medicaid program and let it continue its positive trend of supporting home and community-based services over institutional care.” He also noted the potential value of long-term care benefit in Medicare and a meaningful tax credit for family caregivers, as well as a tax deduction for the purchase of sustainable private long-term care insurance.
There are promising ways for states to help as well. Brown pointed to Washington, which recently passed a publicly-funded long-term care benefit. It provides individuals with $100 a day, with a lifetime cap of $36,500 to pay for caregiving, meal delivery, nursing home fees, and other expenses. She said, “Widely adopting such programs would be expensive, but without help, families like mine will be crushed by needs we cannot meet.”
Employers can be heroes to their workers who also are caregivers by taking a few steps:
- Advocate for the Family Medical Leave Act to offer paid leave.
- Work with universities to support stipends to ease burdens on student caregivers who also are working full- or part-time jobs.
- Offer funding or programs for respite care that is both affordable and accessible.
Brown concluded, “There are multiple paths to better support caregivers. We can start small. We can start by giving voice and visibility to caregivers.”