Profiles in Advocacy
Eva M. Bunnell
How did you come to advocacy?
For the last 20 years that I have been involved in health care advocacy for children and families I did so because my oldest daughter was born with significant disabilities which left her very medically fragile. Really, I had little choice but to become involved. I just wanted to be a Mom, but I learned very quickly that if I did not speak up for my child in meetings and to insurance companies, before the legislature etc., my family would suffer serious financial consequences but more importantly, my daughter's very life was threatened by the problems in our present health care system. I have found that demanding accountability of all those who earn a living from the health care system is critical. Indeed, it can be lifesaving.
How do you feel you've been most effective?
In every single meeting I have attended where I have been supported in offering my input, where my experiences and knowledge of the health care system has been welcomed and utilized, I have felt effective to a certain degree. Maybe I corrected a myth about families of children with special needs in one, explained how to simplify a health form in another, or asked for expanded consumer involvement- in every single place where health care is discussed, I have come to realize that the role of the consumer is vitally important. I didn't need to speak in fancy terms or popular jargon, I just needed to explain what I experienced as the mother of a child with special needs. I am effective when I clearly articulate what works and what doesn't work in the system.
I am effective because I know that at the end of the day, all of the people who are paid to be a part of my daughter's care plan, go home, but I will still be worrying about whether all that my child needs to stay alive is available. At the end of the day I alone will still be trying to figure out how to get her what she needs. That makes me an expert - on par with any medical, social or other service provider out there.
That's not to say that I haven't gotten discouraged. There are not enough of us out there yet. And even while there is much being said about "consumer/professional partnerships", in reality very few meaningful partnerships exist. I have learned that what makes a health care system effective is when the consumer is invited by policy makers to speak openly and often. The health care system is effective when consumers are invited in significant numbers to work proactively on policy and not just in token numbers or only on a focus group level. Placing the consumer in a reactionary role diminishes the chances of utilizing every precious health care dollar to its most effective potential. When dollars are finite, a responsible government needs to be asking YOU, the consumer, how the dollars they spend in health care can better meet your stated needs.
Consumers should be involved at every level of decision making. Each and every service provider, agency representative and facility should be required to ask of their clients what their treatment goals are, and after treatment, be asked whether or not their goals were met. How else can we know how the dollars we're spending are actually doing what they're intended to do? When I realize how difficult it is to get dollars into health care programs, I certainly want to be sure that policy makers hear directly from those using those programs and/or services how its working. I don't need someone else speaking for me and neither do you.
From assisting in directing research efforts to the development of outcome measures, to identifying when a doctors appointment should take place, consumers are the ultimate end user of all that is funded in the health care system. "Recidivism", "non-compliant" patients are bad labels attached to good people who in reality may not be supported well in being an informed and involved consumer.
Gaps exist in the health care system not just when not enough money is involved, but most often when someone doesn't see it as their job to close the gap. The right attitude, a helping attitude on the part of providers and agency staff is very important to ensuring that we as consumers can make our way through health issues whole and healthy. And while fostering the right attitude cannot be legislated, tying high standards to service dollars can go a long way toward making that happen.
What advice would you give to new advocates? How can they be most effective? What lessons have your learned?
First and foremost, never underestimate the value of your experiences and the importance of your input. Glitches, gaps and other gory gremlins that stick in the crevices of laws and policies in healthcare today exist because your voice has largely been absent in the world of policy making. Remember, what you have been through as a consumer is the front line information that consultants gather to bring to policy makers. Even the most well-intentioned professional advocate cannot know the intricate details of my experiences and present them in a completely accurate manner. When you speak, you speak without any filter that can obscure real and necessary change. Second, when advocating, always be polite and offer your help wherever and whenever possible. Policy makers are deluged with requests from many different factions, and while the consumer should be seen as the key stakeholder in health care, we should always be respectful of a person's perspective and constraints. Remember that it is not enough to come to the table and tell them what's wrong, we must also provide information on what can help. After we have explained a problem, our focus should then turn to solutions. Finally, it is always helpful to be grateful. When someone take the time to meet with you, and when they take the time to really hear you, always say thank you.
Another important lesson I have learned is to never assume that your absence in health care discussions doesn't harm you. I remember vividly being in a meeting with professionals working on behavioral health treatment outcome measures where I was the sole consumer voice, and hearing one of the insurance representatives remark that "anyone who is in treatment for more than 15 sessions ought to get a life." I was appalled, but amazingly not one other person spoke out against this unbelievable lie. What that insurance company (and obviously everyone else in the room) needed to know was that "getting a life" was exactly what anyone seeking mental health treatment was looking for, and that sometimes mental illness can't quite be so tidy. As the sole consumer voice it was difficult to be seen as a watch dog so to speak, and therefore I was not heard. Certainly I'm not lumping all insurance reps and service providers into a bad category, there are many individuals working in health care who greatly respect consumers and are very compassionate, but the people who are speaking on your behalf today often don't know your perspective well enough to represent it in important policy discussions, and many important policy decisions are being made based on incorrect assumptions. I wonder if in the instance described above, if there had been a balance of consumers to "professionals" in the room, if the logic of getting better in 15 sessions would have been allowed to hold water. Of course most people may not require more than 12 sessions, but for those who quite medically do, why should they be denied because someone in a meeting didn't really understand the healing process?
Why is it important for consumers to advocate for systems change as well as for themselves and their families?
The time to advocate for a better health care system is NOW. Don't wait until a health care crisis throws you into the system. Sadly, if you wait until then, you will quickly learn that you can expend more time and energy fighting for appropriate coverage, access, etc., than on keeping healthy-and your health should be your primary concern. Please don't wait to get involved.
I have said this many times... My child's diagnosis will more than likely mean that this beautiful life will be significantly cut short. There is nothing more painful than losing a beloved family member, especially a child. I want to spend the time she is here with me on creating wonderful memories that I know will be of much comfort to me and my family after she is gone. The present health care system has denied me even that. I am ashamed that it took my daughter's illness to get me involved. But I didn't know that the health care system was in trouble before she was born. If you are reading this, you now know. Don't let this happen to your family or to other families you may know. Help us.
We need you, we need your voice. Ultimately, what will make the health care system work for each of us is when we understand that it is OUR health care system, and that we are the most important stakeholders- the consumers. That's you and me. It's who everyone else is talking for and about. We know more than we give ourselves credit for, and we can absolutely create enduring, positive change.