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Approximately 22.9 million households provide unpaid care to an adult family member or friend. Caregiving, however, is not "free." Caregivers suffer lost wages, lost retirement benefits, lost healthcare benefits, isolation, stress, depression, and tend to have increased health problems of their own. Ignoring the intangibles, though, the AARP estimates the value of the care provided is $350 billion annually. This estimate assumes that 34 million caregivers provide, on average, 1,080 of care per year, with that care having an average value of $9.63 per hour. These estimates likely understate the issue since more than 44 million Americans are believed to provide unpaid care.
The number of caregivers in Georgia was estimated at 1,310,000 in 2006, or 14% of the population. Assuming an economic value of $8.57 per hour, Georgia caregivers provided $12.1 billion in 2006. Again, this understates the true value of the care provided; according to a MetLife survey, home health agencies charge between $13 to $24 per hour for care and, in Georgia, the average cost of a non-licensed homemaker aid is $17 per hour. What this means, in many cases, is that caregivers cannot afford to get help.
The cost of caregiving, though, is not simply one for households. Businesses suffer losses as well. More than sixty percent of caregivers are in the work-force. Employees balance responsibilities at work against caregiving responsibilities at home. More than seventy percent of surveyed employers feel that staffing problems related to caregiving have increased over the past ten years, and ninety-two percent believe the problem will increase over the next ten years. A 2004 National Alliance of Caregiving/AARP survey found that businesses suffer an annual loss of $29 billion in lost productivity due to caregiving. A 2006 survey, conducted by the MetLife Mature Market Institute and the National Alliance for Caregiving, found that total employer losses were $33.6 billion and that the average cost to business per full-time employed caregivers was $2,110. Again, mere incentives and encouragement are unlikely to address business concerns since caregiver-employees often see no economic alternative.
The true economic impact of caregiving is unknown. Economists can only speculate how the loss of $350 billion in spending impacts the economy. Of equal concern for both families and business is a shrinking labor pool as America ages. According to the U.S. Bureau of Labor Statistics, the expansion of the nation's labor supply has slowed to a virtual crawl. That being the case, competition will likely increase the cost of caregiving as employers compete over a dwindling labor pool. Since the cost of assistance already appears to be "out of reach" for many families, higher costs will result in more caregivers "going it alone." This will, in turn, impact businesses, forcing them to accommodate a dwindling pool of qualified employees, resulting in further productivity losses.
There are many reasons why caregiving is burdensome. Not the least among them is a failure to plan ahead. Caregiving, which focuses on assisting individuals with activities of daily living, such as bathing, eating, incontinence, moving around, is not deemed to be "healthcare" and, thus, is not paid for by health insurance. Likewise, it is not paid for by Medicare since Medicare was designed as health insurance for the aged, blind and disabled. This disconnect between the acute care system and the chronic care system leaves many families turning to a limited pool of private resources. Frequently family members have little or no experience navigating the long-term care "maze." They have difficulty accessing complex benefits programs such as Medicaid and Veteran's assistance.
Planning ahead can restore order to a caregiver's life and can help disabled adults age-in-place. The planning process begins with education regarding the long-term care continuum. Families don't understand the various levels of care, when the level of care being provided is inadequate, what to do when more help is needed, what options are available, or how to pay for care. They don't understand how to extend or stretch dollars to provide care at home, or how to provide care for caregivers. Often, this lack of understanding leaves the caregiving burden divided unequally. Exacerbating the problem, fear and misunderstandings regarding the Medicaid program leaves them isolated, unwilling to seek assistance.
Medicaid is the only public benefits program that pays for significant long-term care. Medicaid, at present, has an institutional bias, leaning toward nursing home care. Because of this institutional bias, Medicaid offers limited assistance prior to the time nursing home care is needed. Compounding the problem, the Medicaid nursing home benefit is stingy; it pays for food, shelter and medical care. Convicted felons get all of that, plus clothing, free cable television, work-out facilities and a college education. It's a small wonder why many elders say they would rather die than go to a nursing home. The result is that Medicaid is the choice of last resort since families don't know how to use Medicaid dollars to enhance quality of life and stretch available resources.
Further, Medicaid frightens family caregivers. Often this fear results in a refusal to seek assistance. In part, caregiver fears are driven by misunderstanding. It is unsurprising that Medicaid confounds laypersons since the federal courts find the Medicaid program equally confusing. Several courts have described the Medicaid program as the "regulatory equivalent of the Serbonian bog;" a reference to John Milton's Paradise Lost, describing a bog or swamp where whole armies were sunk. In Friedman v. Berger (1976), a federal appeals court judge said the program has developed a degree of complexity which makes it almost unintelligible to the initiated. He went on to say that "such unintelligibility is doubly unfortunate in the case of a statute dealing with the rights of poor people."
Families struggling to understand the Medicaid program rely on rumor and innuendo. They have heard horror stories causing them to believe that "Mom will have to go to the poor house if we ask Medicaid to pay Dad's bills." Others believe "the State will take the family farm." Very little reliable information exists in the community and, to complicate matters, the Medicaid eligibility rules change frequently.
There are, however, things which can be done to help caregivers. Better education regarding long-term care planning is key, but understanding that planning can begin "where you are" is also important. Education and advocacy empowers caregivers to take charge of an otherwise chaotic situation and make it more manageable.
In addition to planning, there are ways in which communities can support caregivers. In the Dalton area, community forethought resulted in the development of the Ross Woods Adult Day Services. Adult Day Services is designed to help caregivers by looking after disabled adults while caregivers attend to other responsibilities or, while caregivers rest. Ross Woods, which has been in operation for more than 10 years, currently has the ability to look after 22 or so individuals per day. Again, due to foresight, planning began several years ago to expand Ross Woods. Ross Woods recently broke ground to begin construction of a new facility that will more than triple its ability to provide adult day care services. This ground breaking, though, was a step of faith. Additional funds are needed to complete the project. It is interesting to note, though, that if every person living in Whitfield County gave $50 to Ross Woods, or if employers donated $160 for each employee in Whitfield County, the facility would be completely funded.
It will require vigilance and determination to address the burdens of caregiving. It will require cooperation, creativity and foresight. Opportunities exist for those interested in working toward a solution. The question, though, is will individuals prepare before the burden overwhelms them, and will business recognize the threats posed to productivity and lend their employees a helping hand.
June 2, 2008
David L. McGuffey is a Certified Elder Law Attorney, licensed in Georgia and Tennessee. His office, located in Dalton, Georgia, helps elders and their caregivers find, get and pay for good long-term care.
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