Special Edition - Guest Column
Health Care 'Reform' Could Overwhelm Family
Caregivers
From New America Media, Commentary,
by
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.
John
Paul Marosy is the author of Elder Care: A
Six Step Guide to Balancing
Work and Family, available from Bringing Elder
Care Home Publishing online
at our Web site or by calling
508-854-0431.