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By Gema G. Hernandez, D.P.A.
Caregivers are the backbone of
this society and as such, the country must begin to
honor and support their needs and desires. Without
caregivers willing to give up their personal lives to
keep their loved ones at home, the economic crisis our
country is presently facing will be much worse and the
Medicaid deficit may reach a trillion dollar amount
within the year. It makes economic sense to allow
caregivers to direct the care of their family members,
especially if the family member is no longer able or
willing to care for himself or herself and the caregiver
is willing and able to take this responsibility. After
all, without the caregiver, there is nothing that will
keep a frail person at home.
It also makes
human sense to provide financial assistance to
caregivers. Some of them will need to give up their jobs
because employers may not be sensitive to the
caregivers’ needs or would be willing to allow for the
missing days and missing focus. Caregivers should be
assisted financially if they are willing to provide the
services. This way, the entire family can financially
afford to take care of a frail child or a sick elder at
home.
However, even though it makes
economic and human sense to change the existing policy
and begin to invest in the caregiver and in the family,
no government official has taken the leap of faith to
change the system. On the contrary, we continue to
invest hundred of millions of dollars in supporting and
expanding nursing home placement while family members
watch in horror as their physical, emotional and
financial strength disappears.
If it makes
sense to help families direct the care for their loved
ones and even receive payment for what they are willing
to do, why is our government maintaining a system of
care driven not by the consumers, but by the agencies?
Our country’s system of care gives control and decision
making authority to the agencies and businesses, not the
person or the family. This system is very expensive,
impersonal and inflexible. It is my belief that unless
the caregivers of the nation come together to demand
with one voice that our loved ones be given the option
of direct control of their care, the system will not
change and the resources we need to make our family
situation more manageable will continue to go elsewhere.
The only power we have is the power of our combined,
synchronized voices demanding that our state provide a
consumer directed care option. Unless we speak up, this
will never happen because we will be left out of the
dialogue and negotiations will take place at the time of
budget allocations where we have no representation.
I am a firm
believer in consumer directed care. It is the only
mechanism allowing caregivers and their loved ones to
choose the providers and to select the best combination
of services to meet their unique needs. This is
particularly important in rural areas where consumers
may be waiting to receive services, not because the
money is not available to pay for services, but because
there are not enough workers to provide services. There
are not enough workers or agencies willing to transport
the individual, to deliver daily meals or to bathe the
patient. In situations like this, it makes sense to hire
a family member. I say hire, because in some cases, the
family doesn’t have the financial resources to survive
without a job. This is a cost effective way to deal with
the aging population and in meet the demand for quality
care. What we have found is that the family member or
neighbor hired to perform the caregiving job will spend
more than the limited hours of service a worker from an
agency will be able to provide and will do so for the
same compensation.
Consumer
directed care is one of the solutions to the budget
crisis we are presently facing. It eliminates some of
the administrative costs that are now consuming more and
more of our tax dollars. It also caps the cost of
providing services because family members are more
willing than providers to accept the existing payment
system and do much, much more with the same and not ask
for a higher reimbursement rate or for increased
benefits. Let’s face it: Caregivers have no benefits, no
salary and no options. Most caregivers would be happy
with a little support and more control of the lives and
dignity of their families.
Maybe the way to make sure
consumer directed care is not forgotten is to add a
consumer directed care option to each of the existing
states’ laws and to incorporate the consumer directed
care program as an integral part of the Administration
on Aging’s new Caregivers Initiative program. This is
our window of opportunity to incorporate in the
implementation of the Caregivers’ Initiative program at
the local level. The Caregivers’ Initiative at the
federal level was designed to support new ideas and new
efforts to make caregivers’ lives easier. So far, the
funding for the local programs has not met the
expectations. What I have seen is that the programs
getting financial support are not introducing new ideas,
but just expanding some of the already tested concepts
like additional respite hours to cover weekends and
nights, more regional conferences, or adding
multilingual support groups. These are good expansions,
but they do not focus on the intent and purpose of the
Caregivers’ Initiative. Consumer directed care can do
what it can to meet the goals and objectives of the
Caregivers’ Initiative program while introducing a more
humane and dignified way for our caregivers and their
family members to age in place, age with the security
and purpose in the home and community they love.
Whether consumer
directed care makes it to the general public and becomes
a household idea is up to us. If we don’t ask for the
program, we will never get it and it may go away because
of lack of demand. We need to take a more active role to
assure that our generation of caregivers are given the
option to stay at home without more sacrifices than what
is needed. We need to allow the caregivers to do what
they do best without worrying about their own futures.
The time is now to request the establishment of consumer
directed care as a service option. If we remain silent,
we will never be able to achieve the control we desire
in the care of our elders, our children and our most
frail citizens. This is your wake up call to action.
Gema G. Hernandez was the
Secretary of the Florida Department of Elder Affairs
from January 5, 1999 through October 2001. During her
tenure, Secretary Hernandez facilitated the most
comprehensive programs for Caregivers in the nation
ranging from the implementation of Consumer Directed
Care, the institutionalization of Caregivers regional
and statewide conferences, the inclusion of Caregivers
liability and challenges in the client assessment tool
and the development of a new caregiver’s burden scale,
specifically designed to capture the values and beliefs
of the Hispanic population. Dr. Hernandez is now a
consultant. She can be reached at:
elderreadycommunity@earthlink.net
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