Can we eliminate Child Abuse in our Lifetime?

LESSONS FROM THE HALF-CENTURY OF PROGRESS IN OTHER AREAS OF CHILD HEALTH

By: Richard Krugman, MD, Chair of the Board & Lori Poland, M.A., L.N.P., Founding Executive Director

Our careers, while vastly different, led us to find a common denominator in our focus to end child abuse and neglect. Dick (Dr. Krugman) began his career in child abuse over fifty years ago. As a third year medical student, he had heard C. Henry Kempe lecture on the Battered Child Syndrome. It was a compelling talk on a condition that had he said he’d never heard anyone speak about before. Two years later, as an Intern in Pediatrics at the University of Colorado School of Medicine, he was faced with his first case – a seven-month-old infant who had been beaten to death by his mother. Kempe, the attending physician had him then present the case at a Morbidity and Mortality conference the next week. What was clear in the review of the records was that any one of 25 health and child welfare professionals who interacted with the mother and her baby over a seven-month period could have prevented the death of the baby but no one did.

This had an indelible impression on him.

During his residency (1968-1971), Dick cared for hundreds of premature infants less than 3 weeks gestation, young children with Cystic Fibrosis, Acute Lymphocytic Leukemia, Congenital Heart Defects, and Bacterial Meningitis most of whom either died or had serious consequences to their physical and emotional development. Over the past half century, the outlook for children with those and other serious pediatric illness has dramatically improved. Over those years, not-for-profit private foundations formed to collect donations from individuals and corporations to support research, training and clinical programs focusing on a specific disease (e.g. leukemia, juvenile diabetes, cystic fibrosis) or, more broadly diseases of nearly every organ of the body(e.g. Heart, Lung, Kidney, Liver). These non-profits individually and collaboratively have worked alongside others such as the National Health Council and Research!America and have effectively lobbied the US Congress for billions of dollars to be appropriated to the National Institutes of Health (NIH) for basic and clinical research that has dramatically reduced the morbidity and mortality of pediatric disease.

A glaring exception to this positive story has been the striking paucity of funding for research and training in child abuse and neglect from the NIH and any not-for-profit organization. Five children a day have died because of abuse or neglect for most of the same 50 years that we have made progress elsewhere. It is now clear that the downstream effects of child abuse and neglect are associated with several health and mental disorders. Nevertheless, the “Health” side of the Department of Health and Human Services has historically viewed abuse and neglect as a social problem that could be dealt with by the Office on Child Abuse and Neglect, which is buried in the Children’s Bureau on Human Services side of the agency.

Further, just as 25 professionals exhibited gaze aversion in the child abuse case described above, there appear to be dozens of NIH grant programs and foundations raising funds for suicide prevention, eating disorders, alcohol and substance abuse, depression and other illnesses that seem to have not studied the relationship of abuse and neglect as one of the etiologies of the disorder in their grant programs. The result of this is that there has been a half-century history of underfunding of research on the child abuse and neglect as a health issue. The increasing recognition that abuse and neglect are not just social and legal issues, but health, mental health and public health issues of great importance led us to start the National Foundation to End ChildAbuse and Neglect (EndCAN) as a 501(c) 3 not for profit foundation. We are intending to model ourselves after the dozens of existing successful foundations such as the March of Dimes, the American Heart Association, the Juvenile Diabetes Foundation and others.

Why us and why now?

At the young age of three year, I was a boisterous little girl who had survived an abduction from my front yard. A stranger had driven up, asked me if I had liked candy, took me to the mountains and after sexually abusing me, dropped me in the pit of a 15-foot outhouse toilet and left me for dead. Four days later, I was found, reunited with my highly traumatized family and to sum it up, I’ve spent my life since, working toward finding a way to help people who’d been through challenging experiences.

Dick and I met shortly after my kidnapping when he and my Psychiatrist, David Jones worked with the legal system to conduct a video deposition of my experience, which ultimately let to the conviction of my kidnapper. Dick was the Director of the Kempe Center back in the early 80’s, where they provided services to families who had experienced abuse and neglect. Dick and Dr. Jones had quickly become safe people to me, providing me with security, nurturing and protection simply by being available and attentive to my trauma and psychological needs. Dick and I lost contact for the better part of my upbringing, however in my senior year of high school we reconnected and stayed in periodic contact until I had completed my graduate school training and had spent years in human service related work. I had opened a wellness center and Dick became a professional mentor to me. We began meeting on a regular basis having discussions about what was missing in the field of CAN. At the end of every meeting, we sat together thinking and often saying aloud, “we ought to do something to change that.” Therefore, when Dick retired from his “25 year cul-de-sac” as Dean of the University of Colorado School of Medicine in 2015, we decided to explore whether a national foundation such as the March of Dimes was feasible for the field of child abuse and neglect. We began a listening tour six months later and soon realized that there was no one working on research, prevention, education, training and advocacy for the field of child abuse and neglect as a whole. Many were surprised by this, and encouraged the development of such an idea.

So, with that, in December 2017, EndCAN filed a 501©3 application with the IRS and began the endeavor of opening a one of a kind national foundation, called the National Foundation to End Child Abuse and Neglect (EndCAN).

Mission and Strategy

The ultimate mission of EndCAN is to end child abuse and neglect in our lifetime. We believe that if we can change the conversation about abuse and neglect from being seen solely as a social and legal issue to also a health, mental health and public health issue, we can gain some momentum, increase collaboration and ultimately work to unite a larger voice to end abuse and neglect. Historically, anyone who has experience with CAN often feels a sense of shame when looking at or talking about it. The victims, the perpetrators and even by-standers all feel this level of shame, which leads to an intent to hide it and never talk about it. This is where we will begin, since we firmly believe that if a problem is never discussed – specifically using the words “child abuse and neglect” – it does not exist in the public eye.

Our first task, then, is to develop and implement a public awareness program that enhances the public willingness and ability to talk about abuse and neglect. As we have seen in other areas that were originally looked on as social issues such as Suicide, AIDS, Alcohol and Drug Abuse, and Smoking, once it was discerned to be a health issue, people become OK talking about it and developed the willingness to address it and or respond to it in a positive way. The shame and stigma associated with being a victim, a perpetrator and even a bystander of abuse and the “gaze aversion” professionals and the public have in avoiding the issue must be overcome. To implement such a campaign will require $3-4 million annually. Strategically, we intend to work with other national child and family focused programs (e.g. Zero to Three, Prevent Child Abuse America, Casey Family Programs) to seek foundation and corporatesupport for such an effort. In our own effort to ensure our effectiveness, and measure our outcomes, we began with a baseline national survey with Research!America to see what the public thought about child abuse and neglect. The results indicate that 42% of those Americans surveyed viewed child abuse and neglect as a serious public health problem. It ranked below drug abuse (67%, cancer (55%) and obesity (46%) as public health issues, but above Heart Disease (39%) and Alzheimer’s (34%).

Our second task is to support the infrastructure of the multidisciplinary field of child abuse and neglect by funding research and training. We have started with Child Abuse Pediatric Subspecialists. A decade ago, the American Board of Pediatrics approved the Child Abuse Pediatrics subspecialty. There are 21 accredited programs but there is no NIH funding to support training or research to develop the research pipeline and infrastructure every other pediatric and adult subspecialty has had for the last 50 years. In order to pilot our own ability to request, review and fund grants, EndCAN issued an RFP to the 21 programs in August 2018. Three two-year grants were awarded to first year fellows at the University of Pennsylvania, Baylor University and the University of Toronto. The funding for these grants came in a joint effort with Casey Family Programs and EndCAN, a partnership EndCAN intends to replicate with other funders and foundations in the field.

The third funding initiative for EndCAN has been to invite others to join in what we call “Disruption Papers”. The question posed to the field was: if we were to start over (knowing everything we know now after 50 years of doing this work) how should we construct the ideal research, training, clinical and prevention programs to assure that all abused and neglected children and their families would get the treatment, care and the support they needed (whether the abuse was intrafamilial or extra familial). Further, what do we need to do to assure that all of the 3-4 million children born in the US each year would grow up in an abuse free environment?

The initial stage was requesting letters of intent from those interested in participating. After a panel review, finalists were identified and have submitted their full proposals which are currently in a blind peer review panel of 16 professionals. The final paper for each category will be announced mid-February 2019 and will be awarded a $10,000 prize, publication and they will present their papers at EndCAN’s first annual summit in March 2019 held in Denver, Colorado. The Disruption paper contest is co-sponsored with The Haruv Institute in Jerusalem.

The summit will highlight the final papers as stated above. In addition, EndCAN will convene a diverse population of attendees to join in the open forum discussion on implementation, execution and expansion of the ideas and thoughts suggested in the disruption papers presented. EndCAN has invited legal and policy experts to attend the summit with the intent to create and suggest any necessary legal modifications needed to allow implementation and testing of the new approaches. EndCAN intends to publish the papers as a supplement to a Journal or as a Monograph, and will then use these papers as a roadmap for future grant making and organizational strategic development.

Lori Poland, Co-founder and Executive Director of EndCAN is dedicated to the mission of ending child abuse and neglect in our lifetime. Lori’s personal exposure to abuse and neglect has fueled her drive and passion to pursue her career in mental health. Much of Lori’s work is to focus on the messaging and conversation around child abuse and neglect. Lori believes that shame has a significant role in the prevalence of abuse and neglect and therefore millions of survivors, thrivers and transcenders don't speak of their own abuse, keep it “buttoned up” and carry on in life. These same people can have a significant impact on the field, allowing an understanding of how some “make it out” while others continue to struggle, united their voices, standing up against abuse, showing that the majority of people who were once abused do not grow up to be abusers themselves. When we take shame out of abuse, people are more inclined to talk about it. Shaming a parent for harming their child most certainly won’t cause them to be better parents, instead it may cause them to be better at hiding it next time. Lori is a firm believer in C. Henry Kempe’s theory “abusive parents love their children very much, but not very well.”

Our job, in Lori and Dr. Krugman’s eyes, is to help them do it better.

Final thoughts

During our yearlong effort to explore the feasibility of having a National Foundation to End Child Abuse and Neglect, we met with over two hundred health and child welfare professionals, foundation directors, lobbyists, association directors and many others. Nearly all were surprised that there was not already something like this that existed. When they realized there was nothing of the sort, they inevitably agreed that it was needed and overdue. Some have asked whether we considered being International in scope. While we have had international child abuse professionals participate in our funding (Haruv) and our disruption papers (Canada and the UK), it is not our intention to work internationally initially. We want to first work within the framework we believe we can create in the US and then, in time, will expand, share information and processes, and grow internationally. The vast majority of child abuse research, training and care is funded by the government in the European Union and elsewhere. In addition, there does not seem to be a great a culture of public support for not-for-profit fundraising for research and training there as there is in the US.

We do not underestimate the challenges ahead. The most successful health based nonprofit organizations raise tens of millions of dollars a year, and have a natural constituency of the thousands of patients who have the health condition that organization is working on eliminating. We believe that the “natural constituency” for our foundation are the tens of millions of adults who have been abused in their childhood and have survived their trauma. This is the population of people who we know and believe can help EndCAN be successful in helping future children heal and grown from their abuse and ultimately end it in our lifetime.

We call upon this population of adults to join us in being a part of the larger voice needed to do so.