Last Updated July 2011.
Sandra Sexson, M.D.
"If living were a thing that money could buy
Then the rich would live and the poor would die..."
--Excerpt from the lyrics of the Bahamian lullaby "All My Trials" as recorded by Joan Baez
These words from a lullaby that I first sang to my children years ago and now to my grandchildren, have served somewhat as a mantra to me since they were popular in the 60s. It was these words that have stimulated me to consider my ethical responsibilities as a practicing child and adolescent psychiatrist and a child and adolescent psychiatric educator. I completed CAP training in 1978, well trained as a clinician, even a patient and family educator, but with no exposure to the field of mental health care advocacy. As a career-long student of biomedical ethics, I soon found that within the context of the ethics of the care of my individual patients, "advocacy" became an imperative, something that just seemed to evolve naturally. Without a qualm I found myself advocating for my individual patients in the school, in the pediatric hospital, wherever they could be better served if the system took into consideration their individual needs. So it was not hard for me to argue vehemently for parents to be able to stay with their child until he/she was asleep before surgery or for the school to offer a child with attention problems a quieter place to take a very important test. These issues within the ethics of care of the individual patient came into conflict with the ethical principle of "justice" when I joined the heart transplant team as a consultant and began to grapple with the reality of a truly limited resource (hearts for transplantation) and began to have to balance the ethics of "care" with that of "justice." I remember the transplant surgeon eloquently voicing his opinion that as the physician for the patient, he must advocate for the specific child to get a transplant, leaving the broader issue of "justice" to what he referred to as "society."
Within the context of the limited resource of hearts to transplant, I began to think about the words to that old lullaby in the sphere of my practice of child and adolescent psychiatry. I was appalled the more I thought of the words to that old lullaby, edited a bit so that it became "if mental health care were a thing that money could buy, Then the rich would have it and the poor would be denied." It was then that I determined that my advocacy must go beyond the "advocacy of care" for my individual patients but also incorporate "advocacy of justice," working to assure that all children, adolescents and their families have equal access to the best level of psychiatric care that "money can buy." So, over the years, I dabbled in healthcare advocacy, still not feeling very well prepared to do it well. It took little convincing to have our local Council in Georgia invite Marilyn Benoit, then president of AACAP and an avid advocate for foster children among other important issues), to conduct a workshop on Advocacy for our Council. However, it wasn't until the American Academy of Child and Adolescent Psychiatry began its annual Advocacy Days in DC seven years ago that I began to feel more comfortable in the role of advocacy for children, adolescents and families with mental health needs, not just for my own individual patients. Since its inception, under the leadership of the Department of Government Affairs, AACAP Advocacy Day has brought AACAP members, family members and youth impacted by mental illness to DC in April or May to work together to decrease stigma and raise awareness of the needs of these children and their families. And, at last, at least for me, the activity was immersed in training for advocacy as well as participating actively as an advocate. With much trepidation I ventured forth with our Georgia delegation that first year, armed with talking points very carefully prepared by AACAP's Government Affairs department. We were also provided with detailed information regarding our senators and representatives with whom we would meet--what committees they were on, what issues they were interested in, how they had voted on issues about which we were planning to discuss with them, all information that is a necessity if we were to build a bridge for communicating with them. Needless to say, coming from a conservative southern state, we were prepared to educate aggressively while avoiding argumentative interactions. Our first encounter was relatively positive and the representative's health care staffer agreed to discuss with her boss the possibility of co-sponsoring one of the bills for which we were advocating. Our encounter with a second senator's staffer, however, began with the caveat that this senator's office could not support anything that involved spending. Still we gave the health care staffer our information packet and pointed out the legislation for which we were advocating. Then, our family advocate and Georgia NAMI representative, Diane Reeder, started to tell her story. She bravely showed a picture of her son in high school, the outstanding student, athlete, all any parent could ever hope for. Then she showed a devastatingly different picture, his "mug" shot before an incarceration just a few years later after he had experienced his first episode of mania and the subsequent diagnosis of bipolar disorder leading to deterioration and ultimately, jail. She talked about the unavailability of resources for his treatment and the struggles since for both him and the family. I am not sure the staffer was still ready to spend money but he certainly heard the impact of her request which was so much more eloquent than anything we as professionals were able to say without her. I left that first Advocacy Day, more competent and uplifted by the experience, determined to continue advocacy efforts both in Washington and at home in Georgia. We from the Georgia delegation were so convinced of the importance of this effort that we continued to encourage representation and finally decided to support an "Advocacy Fellow" from each of our CAP training programs in Georgia to attend AACAP's Advocacy Day. This year our 3rd "class" of fellows joined our delegation, contributing their enthusiastic support to the continued efforts to educate and advocate on Capitol Hill.
I hope that all of you "Lifers" will consider becoming more active in AACAP's Advocacy Day. No matter how skilled you are, I think that your skills will be honed by the education and support provided by the Department of Government Affairs. And perhaps you will be as fortunate as I and have the opportunity to work with one of our best advocates like the NAMI family member who is a part of our delegation. Since that first Advocacy Day, Diane Reeder, along with other advocates, has come to every Advocacy Day. I have missed only one. She has taught me the importance of the personal appeal coupled with the professional educational input. And at this year's Advocacy Day she again kept me on task. While the rest of our delegation went to meet with one of our senators, she and I were meeting with a young staffer for one of the representatives, a staffer that we had not met previously. I was appalled when the staffer told Diane that hospitals for the mentally ill were too expensive, that families should hire police to come to their homes to keep the patients safe. I was unconsciously beginning to gather my things, ready to leave, when Diane very calmly again began to talk about her son, signaling to me that there was still education to do, even if the ears appeared to be deaf to our message. Again, the staffer didn't sign on to support the bill, but she did hear a little about the needs of mentally ill patients and their families and we started a process that we can hopefully build on. The importance of the family input was immeasurable, and despite a somewhat negative encounter, I left the 2011 Advocacy Day rejuvenated for the "cause(s)" and ready to continue the work at home and again in DC in coming years. The 2011 Advocacy Day brought 230 AACAP members, family members from 40 states to raise awareness in more than 200 Congressional offices of legislation that will benefit child and adolescent psychiatrists and their patients. Fifteen child and adolescent psychiatry residents attended the event, two of which were our "Advocacy Fellows" from Georgia. This is important because, in the words of the former Speaker of the House, Tip O'Neal, "All politics is local." These trainees will enter practice prepared to be advocates not just of the care of their individual patients but advocates for the ethical concept of justice so that optimal mental health care can be accessed by all those in need. They, along with the CAPs and the families, with the support of AACAP's outstanding Department of Government Affairs with work to assure that psychiatric intervention will not be just a resource "that money can buy," but that all the children in our society, rich and poor alike, will have access to the best evidence based psychiatric/mental health care available.