The Broken System of Long-term Care in America

Posted Wednesday, September 18th, 2013| Comments (6) rule
Employees and employers alike bear the costs

Donna L. Wagner, PhD

Associate Dean for Academic Affairs
College of Health and Social Services, New Mexico State University

If you’re helping an older parent or spouse meet long-term care needs, join the crowd. One out of five workers in the United States spends an average of 20 hours a week caring for elder family members. These unpaid services have an estimated value of $230 billion a year—$20 billion more than the $210 billion that Medicaid pays each year for long-term care.

Providing these unpaid services imposes high indirect costs on employers, in the form of reduced productivity, absenteeism, a workforce whose own health is compromised by neglect and stress, and higher turnover, as workers leave their jobs to devote themselves to caregiving. All told, these problems cost U.S. employers $33.6 billion a year.

ReACT (Respect a Caregiver’s Time) is a coalition of companies and organizations focused on employers and employed caregivers. In 2012 this organization commissioned the National Alliance for Caregiving (NAC) to examine “best practices in workplace eldercare.” The NAC studied the eldercare programs of 18 corporations in an array of industries with workforces ranging from 35 to 118,000 employees. The models were as ad hoc as volunteer programs managed by employees who had done caregiving themselves and as formal as paid time off for emergency eldercare situations. Interestingly, paid time off for caregiving was offered only by the smallest company (35 employees), which did so as a strategy for retaining valuable talent. Now ReACT is working with AARP to design a Web site with information and ideas for employers and employees.

Thirty years ago, Elaine Brody, a gerontologist, suggested that family caregiving was becoming a “normative” experience. Surveys confirm that increasing numbers of Americans care for an adult or elder with long-term care needs. As 70 million baby boomers lurch into late life, we can count on increasing demand for long-term care services for at least two decades. Absent a national system that provides high quality, long-term nonmedical and medical care, families will continue to underwrite the true cost of long-term care with time, money, and diminished retirement savings. Employers will also continue to subsidize informal caregiving indirectly, whether or not they also invest in support programs directly.

These facts prompt a host of questions and reactions. Do American families generally have even a basic understanding of how long-term care is delivered and paid for here? Many caregivers are stunned to discover that Medicare does not cover long-term care. Many find it repugnant that their elderly parents are required to spend all of their resources before they can qualify for help from the only public payer–Medicaid. And many caregivers pick up the costs of care themselves, regardless of the burden. Why is there no political demand for subsidized long-term care, given the large number of families coping with the fragmented system now in place? If care has become a normative activity, as Ms. Brody predicted, do families consider it only a personal matter—not a political one?

What about employers? How long will the nation’s employers subsidize the lack of a comprehensive system of long-term care?

This past January, Congress established a Commission on Long-Term Care, and gave it a 2014 deadline to develop a “comprehensive, coordinated and high-quality system” of long-term care. It’s time for a powerful partnership of voters, representing current and future caregivers, to join with employers to demand serious solutions for our long-term care problem.

6 responses to “The Broken System of Long-term Care in America”

  1. kathy thomas says:

    the “caregivers” have no where to turn, and if it continues will find themselves burned out as well. this article is so true and help at this time is not on the way. the country as a whole needs to look for resources, solutions and long term answers for this issue. it is not going to go away.

  2. David Levy says:

    As always you identify the problem and succinctly get to the pertinent issues. Forbes, this week, had an article on how caregivers are becoming younger and cited a 27 year working daughter trying to manage her 50’s something mother with dementia. With Boomers in the prime age group of 45-65, the productivity loss in the workplace gives new meaning to the word presenteeism; even though you have used it in the positive (showing up being present and productive) in some of your past research. I&R EAP doesn’t work, hasn’t worked and wont work, unless and until we have an educated family caregiver. Non- clinical family caregiving focused on practical problem solving and coping skills still outweighs the clinical information needed to keep someone at home. Hopefully, the workplace will smarten up and make managers understand that caregivers are not poor employees and if they didn’t have to “hide” to avoid workplace criticism, but had constructive, directed, workplace support, we would all be better prepared for the geriatric and chronic care “gold rush”. Plus, productivity would flow to the bottom without doing anything more than recognizing them and being supportive. We are all in for rough sledding and the Congressional Committee on Long Term Care is already , “a day late and a dollar short”, but hopefully a better recognition that aging will occur irrespective of anyone’s mandate and we can’t legislate or defund it will resonate. It would be interesting to ask congress how many members are or were family caregivers and who sees it coming back for round two (or three). “Caregiving, the gift that keeps on giving.”

  3. I am a geriatric care manager employed in the Work Life Center at
    SAS,Institute,the largest privately owned software developer in the nation. For several years in row, SAS has been named in Fortune’s Top 10 Best Places to Work category. Indeed, we were named the Best Place to Work in the World. The SAS Work Life Center, located on the main campus in Cary, NC, employs six consultants who are experts in designated life stages that include aging/eldercare,young/special needs children, teens/college age children, financial/legal resources and divorce/separation issues. I am a full-time SAS employee dedicated to assist SAS employees nation-wide as they work through aging and eldercare issues for family-members. Each employee has full access to me five days a week during normal business hours. In addtion to that, they have access to an off-site contracted EAP service at no cost to them. The aging/eldercare benefit has been available to SAS employees for more than ten years. Caregivers at SAS do have a place to turn. I think it’s safe to say that we are way ahead of the game. Employees often say, “What do people do if they don’t have you?” I, too, wonder what they do.

  4. Donna Wagner says:

    Kathy: Your comment reflects the feelings and frustrations of many caregivers and, while there are some supports available in the community through area agencies on aging and non-profits, most caregivers are too busy to search these out and find the one that suits their needs the best. It’s a difficult, all consuming endeavor for many families.

  5. Donna Wagner says:

    thanks for your comments, David. It’s important to keep working on this issue…it will be huge in the future.

  6. Donna Wagner says:

    Erin: Great to hear from you on this topic. SAS has been a leader in the field of employee caregiving and your approach is considered as a “gold standard” for other employers. Employees need individualized help and your employer provides this — it might be more expensive or “complicated” to develop but I’m sure your retention rate and morale more than covers the costs.