An Article by Mr. LTC
Country needs to confront problems with long-term care
Dr. C. Everett Koop has redefined the concept of health care for millions of Americans. Brand recognition, savvy marketing and digital networks have helped reactive patients become pro-active decision makers and informed consumers. And behind it all, a face: a strong face we have grown to rely on and trust.
The face of long-term care, however, is the face of a problem. It is the face of infirmity and frailty, the face of chronic illness and disability. It may belong to your mother or my father, or to a devoted spouse or helpless child. I know, I look at that face every day in the mirror.
Five years ago, I learned I have Young-Onset Parkinson's Disease. Since then, I have lost most of the cells needed for muscular control, and have become dependent on medications that make it possible to walk and feed myself, and on myriad simple, daily acts of support from others.
Yet, I am but one face. According to a recent study published in "Health Affairs,'' there are 12 million Americans who require personal assistance with what are known as activities of daily living, such as eating and dressing, and with instrumental activities of daily living, such as preparing meals and managing medication. About 13 percent of those people (0.1 million non-elderly and 1. 5 million elderly) reside in nursing homes. Of the remainder who live in the community, a quarter (1. 2 million between the ages 18 to 65 and 1. 5 million elderly) are severely impaired, needing personal assistance with three or more activities of daily living.
Statistics, however, do not adequately convey what it is like to slowly watch your independence slip away, to have activities, once taken for granted, become effortful, or impossible. When this happens, tremendous feelings of hopelessness can develop, feelings as crippling as illness itself. I know these feelings too.
The answer? It is time to redefine our relationship with long-term care. We need a new face: the face of solution.
First, we need a national spokesperson, an articulate emissary who can banter with Larry King, appear at the White House and before the Congress, and infuse people with hope. The fact that three generations of Americans instantly recognize Ronald McDonald while we are without a spokesperson to address an issue as important as long-term care is shameful.
Second, we need to focus our energy and dollars in three areas: Education: We must all understand the nature and scope of the problem, both as individuals and as a culture. Skilled nursing facility care in the Capital Region can cost more than $275 a day, but most families are reluctant to address this issue until after the fact -- mistakenly believing that "some government program'' will provide long-term care.
Rep. Nancy Johnson, R-Conn., has introduced legislation this session that promotes a federal long-term care educational initiative, in the hope that knowledgeable Americans will seize the opportunity to intelligently plan for future long-term care expenses. Choice: We need to acknowledge our options -- not just the choice between medical intervention versus quality of life. Someone needs to ask the hard questions related to the care itself and how and where that care is provided.
Last August, the Supreme Court overturned a lower court ruling that would have allowed Georgia to continue to institutionalize people afflicted with mental retardation, regardless of their ability to function in a structured, community setting. This ruling applied the brakes to the full-throttle policy of institutional care that began under the Johnson Administration 35 years ago with the creation of Medicaid. Sens. Arlen Specter, R-Pa., and Tom Harkin, D-Iowa, have introduced legislation that would promote home and community based care options. Financing: We need a way to pay for this care, combining public and private support and accountability for everyone, not just those in need and their families. The current payer system of choice is Medicaid -- a draconian federal program that promotes impoverishment and encourages lawyers to help their clients transfer assets in order to become "artificially impoverished'' and thus eligible for Medicaid long-term care benefits.
In addition to the $100 billion we currently spend from tax revenues to subsidize institutional care, Americans pay another estimated $200 billion to care for family members who remain in a home and/or community care environment. Last month, Congress took the first step in addressing this issue by passing a measure that would provide discounted, private sector long-term insurance policies for federal employees. But long-term financing needs more than a short-term fix. It's not an option for many seniors because of pre-existing medical problems and attained age premiums. If long-term insurance is to be effective, insurers need to design more innovative policies for 45-year-old employees, not 75-year-old retirees.