Council on Children with Disabilities:
Arnold J. Capute Award

2002 Capute Award Recipient

Duane F. Alexander, MD, FAAP

It is a pleasure to bestow this year's Arnold J. Capute Award upon Dr. Duane Alexander, Director of the National Institute of Child Health and Human Development (National Institutes of Health), who is receiving the award based upon the lifelong dedication of his career towards minimizing childhood disability and improving the care of affected children. In his current role, Dr. Alexander is leading the national effort of promoting maternal-child health and medical rehabilitation research. During his long tenure at NICHD, dating back to 1971, he has spearheaded controlled trials of phototherapy, helped in the development of federal guidelines on human research, including those involving children, developed trials relating to prevention of prematurity, and developed multiple federal programs centered around improving maternal-child care.

Dr. Alexander has been the recipient of other honors and awards by related organizations, including the American College of Obstetricians and Gynecologists, American Psychological Association, American Academy of Physical Medicine and Rehabilitation, and the Society for Behavioral Pediatrics. He was previously awarded the Excellence in Public Service Award by the American Academy of Pediatrics and has received several awards by the Unites States Secretary of the Department of Health and Human Services and the United States Surgeon General.

Dr Alexander is an ideal recipient of this award based not just upon these accomplishments and contributions, but also upon the example he has set for those in the field of Neurodevelopmental Disabilities. Trained as a Developmental Pediatrician by Dr. Capute, he has exemplified the role of such a professional in contributing to the well-being of children with disabilities through research, service, and advocacy, and has helped shape the field of neurodevelopmental disabilities, both now and in the future. In granting Dr. Alexander this award, we are also indirectly granting further recognition to Dr. Capute as a leader in the training of neurodevelopmental pediatricians and highlight the critical role that training plays in development of the field, as exemplified by Dr Alexander and his accomplishments.

When I first heard that the Section on Children with Disabilities had established this award, my first thought was how appropriate this was and how great it was for Arnold. My second thought, I must admit, was how nice it would be to receive it some day. Thank you for making that dream happen.

It is especially thrilling to be the third recipient, behind Bob Cooke and Larry Taft, who are both giants in the field. That’s pretty good company to be in.

Arnold Capute is a remarkable man. He completely fulfills the criteria for what the Reader’s Digest used to call "The Most Unforgettable Character I’ve Ever Met." He is certainly one of the people most responsible for there being an AAP Section on Children with Disabilities. It has been my good fortune to have been associated with Arnold since the early stages of his developmental disabilities career. Many of you know the story of Arnold leaving a hectic career as a practicing pediatrician in New York based on his doctor’s advice to slow down after he suffered a severe heart attack at a young age. Told to find something less stressful to do in pediatrics than private practice, he approached Bob Cooke for advice. In the same Hopkins tradition in which Edwards Park asked Helen Taussig to learn all she could about pediatric cardiology and congenital heart disease because we needed effective treatments, Bob Cooke advised Arnold to learn all he could about cerebral palsy and developmental disabilities, because soon there would be a special center for children with these handicaps at Hopkins and we needed to be able to care for and help them. Accordingly, Arnold came to Hopkins and worked in the Developmental Evaluation Clinic in the Children’s Medical and Surgical Center with Fred Richardson and Dennis Whitehouse. The only problem was, Arnold did not know how to do anything in a low-key or non-stressful way, so he went about learning developmental assessment and cerebral palsy evaluation at his usual full-throttle pace.

That was where I first met Arnold, when I was a medical student rotating through the Developmental Evaluation Clinic, and he tried to pound developmental milestones and motor evaluation into our heads in his own unique forceful and rapid teaching style. Later Arnold and I were both present at the dedication of the new John F. Kennedy Institute for Habilitation of the Mentally and Physically Handicapped Child, when Bob Cooke was the featured speaker.

Shortly afterward, it was my random chance to be the Pediatric Resident assigned to the Kennedy Institute rotation when the time came for admitting the first patients, primarily children with cerebral palsy who were essentially in long-term care at the Children’s Rehabilitation Institute in Reisterstown, which had agreed to merge with the Institute. I was teamed with Arnold from the Kennedy Institute staff. Just before the first patient arrived of four scheduled that day, Arnold proposed that I do the admission exam while he took the parents on a tour of the new facility, and we would switch roles with each patient. I agreed, and that’s how we started. But when I finished and found the second patient, Arnold was already off with the parents giving them a tour. And so it went all day. At the end of the day I asked him why he had done only tours and no workups. He replied that he had decided to give me all the opportunity for hands-on learning about the extensive pathology of these children, that he could hardly wait to examine them, but they would be around for a long time for him and I had only another week of rotation left. I think Arnold finally saw the 7th patient on the second day. Those records are still there at the JFKI and document this story.

Three years later I worked again with Arnold, this time as a Fellow in Developmental Pediatrics. Arnold and Bob Haslam were my most important mentors. By this time Arnold had completed a term as Acting Director of the JFKI, was Director of the clinical training program, and had firmed up his vision for the future: a Society for Developmental Pediatrics, and a Board-Certified sub-specialty in developmental pediatrics. At this point many of the rest of you enter the picture and pick up the story, so you know the long struggle and the compromises that had to be made, with ultimate success in Board certification, and not only a Society, but an AAP Section on Children with Disabilities. He has also seen his pet teaching topic, developmental assessment using developmental motor and language milestones, become a prominent component of pediatric education and training. So with my long association with Arnold, and the place of honor he has achieved in pediatrics from his contributions, it is especially meaningful to me to receive the award named for him.

The fact that none of these accomplishments came easily only enhances their significance. When Arnold entered this field in the 1960s, patients with developmental disabilities were generally regarded as second class citizens, considered by many physicians to be not worth the investment of time, care, and resources. The physicians, nurses and others who provided their care were similarly looked down upon. With dedicated efforts by pioneers like Arnold and Bob Cooke and Larry Taft and the people they trained, and advances from research funded largely by my Institute, the NICHD, that led to effective means of prevention and treatment, this situation changed. Bob Cooke captured the change succinctly in a commencement address he gave at Hopkins in the 1970s. He titled it "The Gorks are Gone." Today these children are some of the most interesting patients around for what they have to teach us, especially about genetics and brain function. And physicians in our subspecialty can hold their heads high and participate as equals in any scientific research or clinical symposium. If ever one of your medical colleagues seems derogatory or asks why you bother to work in this field, tell them that in the last 40 years we have eliminated MRDD due to PKU, congenital hypothyroidism, Rh hemolytic disease, congenital rubella, measles encephalitis, and Hemophilus influenza meningitis, and ask them how many diseases they have eliminated in their field.

There are a lot more advances like this coming down the pike, but we have gotten to where we are in large part due to Arnold Capute and the science, leadership, teaching, energy, drive, and determination he has brought to our field. Thanks, Arnold, for what you have done for all of us and the patients and families we serve, and for what you have meant personally for many of us, and my thanks to you in the Section for honoring me with the receipt of this very meaningful Arnold Capute Award.