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

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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