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Get Involved!
Advocating for Your Family
The dictionary defines advocate as both a noun and a verb. As a verb, it means “pleading on behalf of something or someone”. A suggested synonym is the word support.
At Family Caregiving 101 we firmly believe that family caregivers need to become strong advocates for their loved ones and themselves, and that we need to be proactive and resourceful in finding the information and help that we need. Having said that, we also recognize how difficult it is for already over burdened caregivers to find the energy and where-withal to battle unresponsive healthcare and social services systems, and sometimes other family members as well, to meet their loved one's needs.
But we also know that many of you will do just that. You will find an inner strength you didn’t know you had and you will make an effort to resolve yet another problem with the insurance company, track down the cardiologist and get him to coordinate with your loved one’s primary care doctor. It’s hard to be an advocate for yourself and your loved one, but if you are not, then life will be that much more difficult because caregiving doesn’t come easy.
Being an advocate means recognizing that you and your loved ones are consumers, and as consumers of our healthcare system are owed good quality care, respect, and responsiveness. Being an advocate means fighting for what you believe is right – whether that is an extra day in the hospital, or a timely report on a new set of tests. It’s getting your boss to understand that now you need some time off, but that you have a plan in place for meeting your responsibilities, and being an advocate is also about getting at least one other family member to recognize you are going to need a break and they are going to have to chip in.
Some of us are sufficiently angry that we find the energy not only to advocate for our loved one’s well being, but also for all family caregivers. When that happens we become activists in a larger cause. Once we acknowledge that the issues of family caregiving that are lived everyday behind our own closed doors are also lived by millions of other families behind their closed doors, we wake up to the fact that family caregiving is more than a personal issue. We realize that it is a phenomenon of life in the 21st century, that our country is only now waking up to as an issue that will affect every family in America before we know it. When we know in our hearts that we are not alone, and when we believe that our lives as family caregivers are made that much harder because of antiquated policies and systems, that’s when we need to advocate for our loved one and ourselves, but that we must stand up for all caregiving families – and that’s when we become not only advocates but also activists.
Standing Up for All Family Caregivers
What does it mean to be an activist instead of, or in addition to, being an advocate? Ira Byock, a noted doctor who is a leader in the palliative care movement, described the difference between advocacy and action in an article entitled: Advocacy and Activism: Missing pieces in the Quest to Improve End-of-Life Care that he authored with some of his colleagues.
Advocacy by individuals can directly improve care for a patient. However, organized public participation, or activism, is required to alter institutional and professional policies, curricula and stands of care. The individuals who are involved in activism may be patients and their families. However, patient and family involvement is activism rather than advocacy if improving care for groups of patients, or systems of care is a goal.
Sometimes actions can have both advocacy and activism as concomitant goals.
Do you recall the outcry over insurance company rules that were sending mothers home from the hospital in less than 24 hours of giving birth? Did you know that it was the public outcry of lots of moms and dads and others who care about women's health making phone calls and writing letters that brought about the reversal in policy? Are you aware that the reason there is a National Family Medical Leave Act is because of the tireless work of activists across the country and that California has just passed a bill to actually pay for family medical leave. It is the first state in the country to do so, and it came about because individuals like you thought it sufficiently important that they picked up the phone and told their elected officials what they wanted to see happen.
And the point in all the stories is that bringing about change is not about how much we do individually, but about many of us taking action.
The time is right for caregiver advocacy and activism. By coming to this Web site you have been an advocate. We hope you'll also become an activist by talking to others about the issues facing your family and others, by writing or calling the leaders in your community, your state, and at the federal level.
All legislation before Congress can be tracked at: http://thomas.loc.gov
If you are interested in contacting your Senators or Representative, but don't know who they are or how to reach them, you can easily find out at http://www.house.gov/ or http://www.senate.gov/