For eighteen years it was my privilege and my honor to serve as a caregiver for my parents. This experience changed my life forever and gave me a new way, a unique way of looking at things. I am sad and glad I don’t have this responsibility any more. Sad because it means my parents are no longer with me and I miss them a lot, some days more than others. Glad because the type of services required to maintain their quality of life despite their frailty and the support I needed to maintain balance in my life, is no longer available. Keeping my parents at home or at least in the least restricted environment, like an Assisted living facility, was a choice when they were alive. Things have changed and that choice may not be available for caregivers at this time.
The Caregivers’ Initiative program is still a secret for the majority of caregivers. First, they have never heard of the Initiative, secondly the initiative has gone primarily to maintain the same type of services that existed before with very few innovations introduced to try news ways to alleviate the burden. Thirdly, the number of caregivers waiting to receive services and financial assistance has increased at a time when some of them have lost their jobs.
Perhaps the problem exists because the way government defines success is different from the way caregivers define success. The two groups interpret success differently. If success is defined by the fact more people, corporations and the general public know and understand the role of the caregiver in an aging society, then we have achieved success because society in general is more aware of the challenges facing caregivers. Being aware of the joy and burden of caregivers is one thing, but meeting the challenge they face as they feed, bathe, shop and drive their loved one is another. It is important to achieve consensus as to what constitutes success because the Caregivers’ Initiative Program is the benchmark the government will use to measure its effectiveness in the social and human arena. It is also the Bush administration’s only program that was implemented under his watch.
Because this is the benchmark the government is using I think it is important to suggest they collect data connected to real day-to-day needs. As a caregiver I wanted to know the numbers of new caregivers receiving services since the initiative began. I also think it is important to know the increases in the type and the amount of services given to caregivers as a result of this initiative. Where has the money gone in real dollars and cents? Unfortunately, the numbers are not there to objectively confirm the success of the program. This is especially true when some caregivers are saying that the funding for the Caregivers’ Initiative program has replaced, not increased the available funding for a wide variety of in home and community based services. If you add all former program budgets and compare those numbers with what the Initiative has done we discover that the same money or less money has been earmarked for services to help the caregivers maintain their loved ones at home.
As a caregiver I think we need to define success in terms of every single caregiver. When every single caregiver of a disabled child, a frail elder, or a brain injured person receives the financial and physical support they need to keep their loved one in the most comfortable environment possible, we have achieved success. People would say to you this is impossible. It will cost a lot and it will require manpower beyond our present capabilities. Under the present system this may be right. Let us take one example from Florida. Waste and fraud in the Medicaid program and in the community care for the elderly program costs the state of Florida in 2001 in excess of 700 million dollars. Imagine what we could have done with 700 million more from one state alone. Take the 700 from one state and multiply that by 50 states. The amount is unimaginable. And this is without raising one penny in taxes.
Creating a system that is caregiver friendly is possible if government, federal, state and local, begins to 1) stop fraud at the provider levels, 2) allows consumers to direct the care of their loved ones, and 3) and empower the inspector general to be a truly independent agent watching the contracts and the dollars. I think it is time to start a budget campaign similar to the one which focuses on the school program. Let us not leave one caregiver behind. We need to talk at the national level not only about not leaving a child behind but also not leaving one single caregiver behind.
I think it is time to start the Leaving no Caregiver Behind campaign. Because as long as we have one caregiver suffering, in need of help and in need of care we cannot proclaim that the program that was specifically designed to help caregivers is a success. Success is not a state of mind but a real issue with real data and real stories. Success should be measured one caregiver at a time and should not be based on how long the caregiver is able or willing to care for the family member at home, but it should be measured based on the type of services, the cultural competence of the providers and the general well being of both the caregiver and the care recipient.
The more I talk to caregivers the more I am convinced that if we listen to their requests, if we pay attention to their proposals, we will come up with a budget neutral program. Also, the manpower shortage issue will be moot because caregivers will constitute a new pool of workers never before tapped. These should be the core principles of the Caregivers’ Initiative Program because it will give more, not less to those in need of care. Providing support to a caregiver can reduce the budget deficit because for the same amount we pay a provider to do the shopping, the bathing and the feeding we can pay a caregiver who in turn will provide 24 hours a day of unconditional love and care.
Yes, success should be measured one caregiver at a time, and until that time, the final assessment is still out there for the only tangible program the Administration on Aging has implemented in the last three years.
Dr. Gema Hernández