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Health Care ‘Reform’ Could Overwhelm Family Caregivers

New America Media, Commentary, Carol Levine Posted: Aug 13, 2009

Health reform is here again, and unlike recent attempts to bring the United States into the Age of Enlightenment, this time some of the currently uninsured 45.7 million Americans may obtain access to health insurance.

But access to insurance alone will not solve problems of mismatched financial incentives, patient safety, fragmentation, inadequate primary and geriatric care and health disparities, such as between white and ethnic groups. Without reforming the delivery system, insurance reform will be a half-way measure.

What’s more, as currently formulated, health reform does not include access to long-term care. Sen. Ted Kennedy’s proposed Community Living Assistance Services and Support (CLASS) Act—given a recent nod by President Obama—would be a government long-term care insurance program and a limited solution at best.

As a former family caregiver and director of the Families and Health Care Project at the United Hospital Fund in New York, I’m particularly concerned, about the failure to include support for family caregivers as an essential part of the health care workforce. Family caregivers are the bedrock of long-term care, but like bedrock, they are mostly found underground.

Long-term care in the United States has long meant nursing homes as one’s final destination. That might have been true years ago, but no longer. Today we know that chronically ill individuals transition in and out of hospitals, nursing homes and home care agency services on fast forward.

At each step family caregivers are expected to take on more complex and demanding responsibilities, for which they are not routinely trained and supported. Unlike caregivers of the past, today’s family caregiver often must manage new home care technologies that were only available in hospitals until recent years.

Phyllis, a woman in her 70s caring for her seriously ill husband, said in one of our focus groups, “He came home from the hospital with a feeding tube, and I was responsible for making sure it worked right. My generation doesn’t know from computers, and I was terrified.”

Understanding and following complicated medication schedules is the most common problem following a transition, caregivers and professionals agree. And it’s even more daunting when a caregiver or patient does not speak English fluently.

The national movement toward rebalancing long-term care away from nursing facilities and toward home- and community-based services is laudable. But “home- and community-based care”—a buzzword among health professionals--is often a patchwork of programs administered by different authorities using different eligibility criteria and levels of service.

Most important, these services implicitly assume that family members will provide most of the care and will be able to sustain it indefinitely. This is a flawed assumption on an individual level and collectively. My primary fear about health care reform is that even more care will be handed off to unprepared and overwhelmed families.

Policy makers cling to outdated assumptions and standards that no longer fit long-term care. As long as family caregiving is described and measured as “informal” domestic chores, the traditional dismissive view of women’s work, it will not be appropriately valued.

In its 2008 report “Retooling for an Aging America: Building the Health Care Workforce,” the Institute of Medicine concluded that “the definition of the health care workforce must be expanded to include everyone involved in a patient’s care: health care professionals, direct-care workers (such as poorly trained and paid home health aides), family caregivers--and patients themselves.

All of these individuals must have the essential data, knowledge and tools to provide high-quality care.” Reaching this goal is essential to health reform and my hope for the future.

Carol Levine is director of the Families and Health Care Project at the United Hospital Fund in New York City and its Next Step in Care Web site.

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