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Let’s talk about something many of us tend to shy away from – growing old. Most Americans aged 55 and above express a strong desire to age in the comfort of their own homes. The appeal is undeniable. Remaining in familiar surroundings, surrounded by the places, faces, and memories we hold dear, fosters a sense of comfort and independence. It’s a modest ambition, but the logistical and economic challenges are undeniably daunting. Even those in good health may find themselves grappling with the basic tasks of daily life, eventually requiring assistance from caregivers, whether paid or unpaid, to maintain their independence at home.

Caring for our aging population is a monumental task, one that our society is, unfortunately, ill-prepared to handle. Currently, around 42 million Americans are providing informal support to individuals aged 50 and older, and many of them are grappling with the immense financial and psychological pressures that caregiving entails. As our nation continues to age, we are becoming a nation of caregivers, and it’s clear that we need a new system of support to address these growing needs.

For most older Americans, care often comes from unpaid family members or friends, who collectively contributed approximately $600 billion worth of free labor to the economy in 2021, according to AARP. However, this care is far from free for those providing it.

Consider the story of Belinda Henry , a 63-year-old professional in New Hampshire, who spent over a decade caring for various elders in her family.  She juggled caregiving responsibilities while shuttling between  home and her mother’s residence 50 miles away, where she took her to medical appointments. The financial strain of caregiving contributed to her bankruptcy, and the stress took a toll on her health.

Mrs. Henrys’ story is just one example of the unique but common challenges faced by caregivers. Family caregivers often allocate around a quarter of their income to caregiving expenses, including rent or mortgage payments, home modifications, and medical bills, creating substantial financial burdens.

Furthermore, the time spent caring for loved ones means time away from paid work, resulting in an estimated annual loss of $522 billion in wages for informal caregivers. Many caregivers suffer from serious financial hardship and report declining physical and mental health. Caregivers face higher risks of depression, cancer, and even a higher mortality rate compared to noncaregivers.

The role of caregivers is becoming increasingly demanding and complex. As the American healthcare system shifts medical procedures from hospitals to home settings, family members often find themselves responsible for managing medical tasks such as injections, wound dressings, IV lines, ventilators, and providing care for dementia patients. Unfortunately, many caregivers receive little to no training for these critical tasks, leading to increased stress and potentially affecting the quality of care.

In addition to the unpaid care provided by family members, many older individuals also require paid help, even if it’s just to provide respite for family caregivers. However, the caregiving labor market is riddled with challenges, including high turnover, worker shortages, and poor compensation. Even before the pandemic, the field faced an estimated 8.2 million job openings by 2028. Low pay, reliance on public assistance, and inadequate working conditions have further compounded these issues.

President Biden initially proposed investing $400 billion to bolster the home care economy in his Build Back Better plan, which included improving compensation and training for direct-care workers. However, this proposal was significantly reduced to $150 billion and was ultimately dropped from the 2022 bill. In his latest budget, President Biden included a $150 billion investment in Medicaid’s home- and community-based services, but with ongoing budget debates, the outcome remains uncertain.

President Biden also announced executive actions to support caregivers, but these measures only scratch the surface of the problem. Congress must take more decisive action. Legislation like the Better Care Better Jobs Act would incentivize states to establish better pay standards, training opportunities, and support programs for caregivers. Such investments are crucial for making caregiving jobs more attractive and sustainable.

Affording paid help, even at today’s low wages, is a challenge for many Americans, especially when care needs extend over several years. Unfortunately, existing federal programs are not designed to cover the costs of long-term care at home. Medicare, which primarily covers skilled medical services, does not address daily living expenses or provide respite care, except for hospice patients. Medicaid is the primary source of federal funding for long-term care, but it primarily targets low-income individuals, leaving middle-class families to shoulder the financial burden.

To qualify for Medicaid, single applicants in most states must reduce their assets to no more than $2,000, a provision that often forces older individuals who have diligently saved for retirement to effectively bankrupt themselves to receive assistance.

Many states have made efforts to loosen Medicaid eligibility requirements, but accessibility varies widely, and reimbursement rates are often insufficient. Seniors seeking home- and community-based care must apply for waivers, and eligibility and benefits differ significantly by state. The average wait time for a waiver is 45 months, with over half a million Americans on waiting lists.

Congress has the tools to alleviate these pressures. Biden’s caregiving proposal includes increasing Medicaid funding to improve access to and affordability of home- and community-based care. There are also legislative proposals for tax credits and Social Security benefits for family caregivers, as well as additional funding for states expanding respite care.

Federal policy is just one piece of the puzzle, as some states are actively addressing the issue. Washington State, for instance, has introduced a public long-term-care insurance program, and Maine implemented a pilot program that reimburses family caregivers for related expenditures. Several states have established paid family and medical leave policies, allowing qualified family caregivers to receive compensation, mainly through Medicaid. Voters should demand that their states follow the lead of pioneering states in supporting family caregivers.

With the increasing complexity of caregiving duties, family caregivers need more training and education. Most states have enacted versions of the CARE Act, requiring hospitals to provide caregivers with information about patients’ discharge schedules and post-discharge care needs. However, this measure applies primarily to hospitalized patients, and implementation remains inconsistent. More comprehensive training and education opportunities are essential. The Better Care Better Jobs Act includes incentives for states to make caregiver training more accessible.

Caregivers require support beyond just the physical and financial aspects of caregiving. They need guidance on navigating a complex healthcare system and assistance in dealing with the “psychosocial aspects” of caregiving, which often involve feelings of alienation, isolation, anger, guilt, and anxiety.

Caregiving is a crucial role in our aging society, and most of us will face its challenges at some point. No one should have to face these challenges alone. It’s time for society, lawmakers, and individuals to come together to support caregivers and ensure that aging in place remains a viable and sustainable option for all.

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