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A Call to Action:
Caregivers to Fight for Consumer Directed Care

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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