For many individuals new to family caregiving, a distressing truth often emerges: resources and support are alarmingly scarce.
Those who take on the responsibility of caring for elderly or ill relatives frequently find themselves shocked to learn that Medicare does not cover the expenses associated with nursing homes or provide financial assistance for in-home care, which includes critical tasks like cleaning, driving, and assisting with meals and dressing.
Private health insurance typically does not offer coverage either.
In comparison to other wealthy nations, the United States allocates significantly less public funding toward long-term care.
Caregivers, therefore, must navigate this landscape largely on their own; according to AARP data, they spend an average of $7,242 out of pocket annually.
Moreover, a recent report from the Department of Labor reveals that caregivers forgo an average of $43,500 in income due to the demands associated with adult care responsibilities.
In America, the issue of caregiving tends to be approached as a private matter, rather than a public concern.
While there are 53 million family caregivers in the U.S., many feel isolated and unsupported, relying on a mix of aid from nonprofits, community organizations, church groups, friends, and family.
But how did this situation come to pass?
The PBS documentary titled “Caregiving,” currently streaming online via PBS.org and the PBS app, aims to provide answers by examining the historical context and contemporary experience of caregiving.
Director Chris Durrance describes the film as presenting “a care history of America,” and it offers insightful portraits of families engaged in caregiving today, while also tracing the evolution of care over the past century.
According to Durrance, the nation has struggled with its approach to caregiving throughout history.
Over the last hundred years, there have been significant efforts to establish nationwide public support systems for care, alongside periods when caregiving was viewed strictly as a personal responsibility.
In the early 20th century, individuals who required assistance due to disabilities or age were often sent to almshouses, which served as public institutions of last resort.
The Great Depression overwhelmed these homes, prompting President Franklin D. Roosevelt and his administration to implement the country’s first genuine safety net, aimed at enabling people to remain in their homes.
The documentary highlights Frances Perkins, Roosevelt’s Secretary of Labor and a key architect of the groundbreaking Social Security Act of 1935.
This historic social insurance program provided older Americans with an income, as well as unemployment insurance and resources for vulnerable groups such as children, seniors, and individuals with disabilities.
However, this legislation notably excluded domestic workers, including caregivers, from contributing to Social Security or benefiting from its provisions, thereby relegating their roles to a second-class status and treating caregiving as less than a legitimate profession.
During the 1950s, the emergence of rest homes and convalescent hospitals was facilitated by new federal policies that allowed old-age payments to be directed to private nursing establishments.
The result was a dramatic increase in nursing home beds, which doubled between 1954 and 1965.
In the 1960s, Medicare was established, yet intentionally omitted coverage for long-term care provided by family caregivers or in nursing homes, on the grounds that such care was not considered strictly medical.
Legislators in that era voiced concerns about the financial implications of covering long-term care, fearing it could jeopardize the Medicare program’s sustainability, as noted by law professor Sidney Watson in her analysis of this history.
Conversely, Medicaid, created to assist low-income individuals, was designed to cover long-term care costs, which inadvertently led to a significant expansion of nursing homes.
In the two years following the program’s inception in 1965, government funding for nursing facilities surged by an astonishing 600%.
The 1970s saw stricter regulations surrounding building codes and staffing qualifications that favored larger institutional settings, akin to hospitals, alongside the rise of nursing home chains.
Watson points out that these well-meaning policies transformed what could have been community-based living into a hospital-like experience, indicating that reversing this trend proves challenging.
By 1988, a mere 10% of Medicaid’s long-term care budget was allocated for in-home care, and the current situation echoes this reality, with Medicaid covering 60% of lengthy nursing home stays while providing scant support for those who do not qualify.
The film also delves into the implications of the 1996 welfare reform laws and critiques the Affordable Care Act, which briefly included a provision for a national subsidized long-term care insurance program, only to repeal it soon after due to cost concerns.
Amid this backdrop, the documentary introduces activists striving to reform caregiving policies and promote a new era of support for caregivers.
Significantly, there are hints of caregiving emerging in public discourse: President Joe Biden initially proposed additional funding and policies targeting caregivers in the Build Back Better Act, although those measures were ultimately removed from the final package.
Looking ahead to the 2024 elections, both presidential candidates have announced plans for a tax credit benefiting family caregivers, and a bipartisan bill proposing a federal tax credit of $5,000 per year is currently under consideration in the House.
Durrance notes the overwhelming response the documentary project’s announcement received, with numerous letters, emails, and messages from people eager to share their caregiving experiences and encourage the filmmakers to elevate this crucial narrative.
“I’ve been in this business a long time,” he shares, “and I’ve never experienced anything like this. It was a story crying out to be told.”
The documentary “Caregiving” is part of the Well Beings campaign led by WETA Washington, D.C., and was produced by WETA, Ark Media, and Lea Pictures, with Bradley Cooper serving as the executive producer.
image source from：npr
