CWD (Couples With Disabilities)

The adventures of a dyad with disabilities.

Happy National “Appreciate This” Month, Part 2

Big medicine profits on the backs of family caregivers
Carl Wilkerson, M.B.A.
This post is a response to Happy National "Appreciate This" Month, Part 1 by Carl Wilkerson, M.B.A.

National Family Caregivers Month
November is National Family Caregivers Month. This is the second and final part in our series examining the shortcomings of having just a month of recognition when so much needs to change.

Home care is far less expensive than hospital or nursing home care, even when it involves professional providers. A universal healthcare system considers supporting home care a cost-saver. In the US, it is considered a burden that is not covered by anything but the most expensive of insurance coverage. The profit motive dictates that long-term care be more expensive because there is little profit in supporting family caregivers and other forms of home care. The "costs" are largely from institutionalization, where profit centers become lucrative.

Let us connect some dots for you, in case the point is too subtle. Universal healthcare is an important asset for families dealing with the disabilities and long-term illnesses of loved ones. Pharmaceutical companies, HMOs, nursing facilities and other players in the for-profit medical industry in the United States are making double-digit percent profits, while a substantial part of the population remains unpaid, full-time, always on-call workers. To decide this is okay because family caregivers love the people for whom they care for is tantamount to saying slavery was okay because some of the slaves might have enjoyed their work on occasion.

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Recognition of this work is nice, and certainly, the NFCA president's call for medical records to track the efforts of caregivers is a worthwhile baby step. But in an age when everyone is screaming about healthcare costs, three facts are being ignored.

Overwhelmed by medical costs, home care just isn't profitable.
Home care just isn't profitable.
First, working family members to the point of illness increases illnesses and therefore costs. Several studies have shown that family caregivers have higher rates of stress-related illnesses, both psychiatric and physical, as well as a higher mortality rate, especially among older caregivers. Thus, many long-term caregivers eventually are in need of care themselves.

Second, using family members as on-call, full-time caregivers takes otherwise productive people out of the economy. An AARP Public Policy Institute report points out how much free labor is actually being used:

In November 2006, between 30 million and 38 million adult caregivers (age 18 or older) provided care to adults with a limitation in an activity of daily living (ADL) or instrumental activity of daily living (IADL). Caregivers provided an average of 21 hours of care per week, or 1,080 hours per year.

 Besides being a huge "underground" economy, this represents opportunity costs that are not sustainable. If productive people are not producing to their potential, others in the economy must make up for this shortfall. This approach is inefficient and becomes a circular, no-win situation. Workers suffer long-term illnesses from overwork and stress. Then their family members also reduce productivity, thus burdening more workers who drop out, and the cycle continues. 

Finally, home care, even when it is supported by health care professionals and other caregivers (housekeeping, transportation services, etc.) is only a fraction of the cost of caring for people in nursing homes and the costs of nursing home care are rising while home care remains flat. The unsustainable practice of using family members to care for people with disabilities and long-term illnesses means more people are ending up in nursing homes.

The bottom line, which is understood in countries with universal healthcare, is that sustainable, supported home care provides better health outcomes for patients while reducing costs. This is something that the billion- dollar for-profit, United States healthcare industry doesn't want you to know.

Here's the last dot to connect: Family members who provide this care in lieu of a systematic failure in healthcare deserve more than recognition. Caregivers are men and women who have much more to offer to the world than doing the noteworthy job they do in caring for loved ones. The existing system degrades their talents, often not only to their peril, but to the community's lost opportunities.

We do hope you will show appreciation to the family caregivers in your life and your community. We hope you will recognize that their service is to more than their loved ones. They are providing free labor that delays expensive treatments and care.

We need a system that puts people before profits and will provide care for all of us when we need it. If you think this is someone else's problem, you have little understanding of health, illness and disability, not to mention care. Most of us will either experience a disability or long-term illness or care for someone who does. We are not "them."

Pattie Thomas, Ph.D., is a medical sociologist and author of Taking Up Space: How Eating Well and Exercising Regularly Changed My Life, a sociological memoir. more...

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