When Governor Jeb Bush interviewed me for the position of Secretary of the Florida Department of Elder Affairs in December, 1998 I told him I was a caregiver. I further stated that my mother was suffering from Alzheimer’s disease and that I have dealt with the entire aging service providers from the role of caregiver. My statement to him “I am a caregiver” was meant to define my priorities and disclose my biases. I was putting him on notice that my most important contribution to the job of Secretary would be as a caregiver, not as a political appointee, politician or defender of businesses and agencies. I gave him in those four words “I am a Caregiver” fair warning where my decisions and programs would be focused.
Disclosing where you are coming from is, in my opinion, the ethical and moral thing to do because you are telling the world your values, your biases, and the lenses you will be using to assess different situations. I became a caregiver in 1981 when the issues and concerns of caregivers were kept at home, not discussed in public forums. I became a caregiver when the responsibilities and magnitude of the task was still in the definition stage. We were defining at that time who was a caregiver and what duties and responsibilities that carried.
Today caregiving is different. For one the rewards and tribulations are openly discussed and more people are willing to disclose the financial, emotional and physical challenges the position requires. The rewards and the burdens of caregiving are interchangeable and up to a point help balance our lives one day at a time. But even though caregivers today have more information they do not necessarily have more support. Even though the information is printed in multiple languages, caregivers are still facing tremendous handicaps because they really don’t know how the laws, program policies and program procedures protect them.
As a case in point, a couple of years ago the federal government began implementing the Olmstead Act. This is an Act designed to enforce the delivery of services to our most vulnerable, those individuals that regardless of age are now living in a Nursing Home. Olmstead forces States to provide enough funding to support in a community setting those individuals now living in Nursing Homes that are willing, able and give their consent to move out of the Nursing Home back to the community, if not necessarily back to their homes.
As caregivers we must learn about the Olmstead decision because it could help define what real progress our individual state has achieved in first, complying with the law, and second in enhancing the service options and quality of life of our family member. Few states, and Florida is not one of them, have taken advantage of the President’s Freedom of Choice Initiative by submitting a proposal to obtain additional federal funding to comply with Olmstead. Taking advantage of the President’s initiative means that your state has written a grant to specifically tackle the diversion of individuals in Nursing Homes back to the community. It means that your state has a plan to begin to provide Medicaid patients with what they to maintain is the highest level possible of performance in a community setting.
Some of us caregivers faced with no services, long waiting lists, inflexible programs and regulations that offer no choice but to place our loved ones in a Nursing Home are getting tired of waiting for government to look at our situation. Others of us caregivers have given up our jobs giving up not only our family’s financial stability by becoming a full time caregiver, but we have also forfeited pension plans, higher social security premiums and future earnings representing n estimated lost of $640,000 per caregiver in our lifetimes.
The implementation of a variety of Medicaid waiver programs may or may not have alleviated this situation, but without the willingness of government to help families, the existing shortage of services and funding will continue and family caregivers will continue to carry the entire burden in our society.
Learning about laws and policies in place is as important if not more important than learning about just services and agencies which provide services in our community. Having the law or a piece of legislation on our side that supports family caregivers moves from just being political rhetoric to funding realities. The lack of knowledge of laws and government mandates is our true challenge. This, coupled with our assumption that my loved one or I are not entitled to services, creates confusion and denies us services that are legally and rightfully ours.
An example of how this lack of knowledge affects our ability to receive services can be found in Miami, Florida when last year, in a routine monitoring of an agency, we found approximately 250 Medicaid clients not receiving Medicaid waiver services, but instead receiving a much lower intensity of services under the state’s general revenue program called Community Care for the Elderly Program (CCE). The funds to support the CCE program are limited. This translates into less services, less frequency, less hours and less options. We were told the Medicaid clients and the caregivers didn’t want to be Medicaid waiver clients and therefore they remain in the lower intensity program.
As a caregiver, this information is of extreme value. Not knowing the differences between Medicaid services, state funded programs and united way funded programs can deny your loved one the type and frequency of services they need. Yes, Jeb, I was, am and forever will be a caregiver and yes. Jeb I was, am and forever be a Democrat, a product of the Great Society.
Dr. Gema Hernández
