2003 Job Lewis Smith Award Acceptance Address: Achieving the Unfinished Agenda Through Public-Private Partnerships

It is indeed an honor to receive the Dr Job Lewis Smith award from the Community Pediatrics Section of the American Academy of Pediatrics (AAP). My initial reaction was one of disbelief. How could a federal bureaucrat, with a lifelong professional career in public health, qualify for an award based on Dr Smith’s long-time commitment to “hands on” services in community pediatrics in New York City in the 1800s?Although most of my professional career has not found me in either small or truly rural communities, my roots are clearly there. I grew up in a small rural community in Western Canada, and I began my public health career in the MCH clinics in what was then a rural community in Southern Maryland. I served for 15 years in urban Washington, DC, starting in MCH clinics in the year of the “I have a dream” speech and march on Washington, in the midst of the civil rights movement and at a time of considerable urban unrest. I spent 2 years directing the MCH programs in Hawaii and learned the beauty of the island culture based on family and community, so my life experiences have given me a strong commitment to AAP’s recognition that the health of children must be addressed in the context of the family and the community environment in which they live.In preparing for this address, I learned a great deal about Dr Job Smith’s years of service to children in New York City, and I also learned that his brother Stephen was a founder of the APHA in 1872 and that the 2 brothers championed the benefits of collaboration between public health and community pediatrics. It seemed to me that my receipt of this award reflects that early collaboration since that has been my focus for many years. Somewhere, 2 spirits no longer with us are smiling happily that “we are finally getting it right.” Let me then focus my remarks on that public-private partnership, highlighting some of our joint accomplishments and ending with the challenge of our unfinished work.I came to the federal government at the invitation of Dr Vince Hutchins in 1977. We agreed that legislation written in 1935 through Title V of the Social Security Act to “locate, diagnose, and treat crippled children” had made major contributions in improving care of children but was out of date and needed revision. Dr Hutchins, Surgeon General Dr C.E. Koop, and Dr J. McQueen, past president of the AAP and a leader of the state crippled children’s programs, became my “pediatric mentors” as we began our journey in attempting to achieve that desired goal of improvement in services for children with special health care needs.During the 1980s, we worked together to develop a new model of care. The program that originally served mainly children with orthopedic impairments now included children with other physical disabilities, sensory impairments, developmental and behavioral disabilities, and chronic physical illnesses. The focus of care also shifted from care for the defect to care for the whole child and the family in the context of their environment. Surgeon General conferences in 1987 and 1988, sponsored with the AAP and 70 other professional and family organizations, developed a National Agenda. “Building Service Delivery Systems for Children With Special Health Care Needs and Their Families” was published in 1988. This focused on defining ways to organize community systems of services around the principals of comprehensive, coordinated, culturally competent, family-centered care.Those principles were further discussed in a 1989 article in Pediatrics that stressed the importance of family-professional partnerships based on equality, effective involvement of primary health care professionals in providing care, and better coordination of primary and tertiary care services. An accompanying commentary by the then president of the AAP, Dr Narkewicz, discussed efforts by the AAP to clarify the role of pediatricians in the care of children with special health care needs and stated, “As a basic consideration, the pediatrician should provide a medical home.” Ensuring a medical home for every child became a central part of the national agenda, as it remains today.In the same year, 1989, a major step forward occurred as that national agenda was incorporated into federal legislation. Under the Omnibus Budget Reconciliation Act of 1989, new language for Title V of the Social Security Act directed the states to “provide and promote family-centered, community-based coordinated care . . . for CSHCN . . . and facilitate the development of community-based systems of services for such children and their families.” In 1990, the federal government put forward Healthy People 2000, which called for all states to put these comprehensive systems in place by the year 2000.As I reflect on our partnership, the greatest challenge was to clearly define the components of the systems of care and to quantify and measure our progress. I will confess, we have spent much time and struggled mightily with this task. There is a large theoretical and academic literature on systems building using primarily organization or management as frameworks. None seemed to work for us, and ultimately we turned to families and providers to ask what children and families would describe as a successful system. From those discussions came 6 simple concepts: These 6 simple concepts became major program efforts and are now the required performance measures at national and state levels by which to measure success.From the 1980s through the 1990s, implementation of the national agenda moved forward on many fronts. Grants from the federal Maternal and Child Health Bureau (MCHB) were used to develop models, materials, expert workshops, and other leadership activities in support of state and local efforts to build and improve community systems. A major grassroots initiative resulted in the formation of Family Voices, an organization of families that now provide support and education to both families and providers in every state.The Medical Home project initiated in Hawaii by Dr Cal Sia moved in 1994 to the AAP Department of Community Pediatrics under the outstanding leadership of Dr Tom Tonniges and his predecessor, Dr Ed Rushton. The AAP/MCHB partnership in the development of medical homes for all children was launched. Communities Can, an MCHB project with the Federal Interagency Coordinating Committee (FICC) for young children and the AAPs CATCH program, highlighted and brought recognition to communities that have effectively implemented comprehensive, integrated systems of care for children, built leadership, and provided effective models for other communities.Through our combined efforts, 3 initiatives that became the programmatic building blocks were put into place. These were the Family Voices, Medical Home, and CATCH programs. Our common efforts have also led to improved early screening through the task force on genetic screening, the collaborative efforts to ensure universal newborn hearing screening, and our current focus on Bright Futures for Children, which will provide national guidelines for preventive care and early identification inclusive of children with special health care needs.By the late 1990s, improved systems of care meant that 90% of children born with special health needs were reaching adulthood. However, they were much less likely than their nondisabled peers to finish high school, pursue postsecondary education, get jobs, or live independently. To respond to these challenges and adapt the family-centered care model to the needs of adolescents and young adults, successful transition to adulthood was added as an important outcome when the National Agenda was revised in 2000. The AAP Committee on Disability has played a leadership role on this issue.Through our partnerships, a new comprehensive definition of CSHCN was developed and published in the July 1988 issues of Pediatrics. Now, broadly disseminated, it states that CSHCN are those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally. Measurement tools based on the definition have been developed, and this past January, data were released from the first National Survey of CSHCN, funded by MCHB and conducted in collaboration with the National Center for Health Statistics at CDC. That survey, which will be repeated every 4 to 5 years, gives us, for the first time, reliable, representative data, at the federal and state levels, on the prevalence of these children and measurements of their care.As we began the 21st century, the new Healthy People 2010 again charged the states and territories with putting in place service systems for all CSHCN by 2010. For the first time, Healthy People 2010 also included a goal to ensure all children with special health care needs had a medical home. In February 2001, President Bush released the New Freedom Initiative, a comprehensive plan to tear down barriers facing people with disabilities and ensure inclusion in all aspects of community life.Reports from 9 federal departments outline specific solutions to assist states and localities to implement the Supreme Court decision in Olmstead versus L.C., which requires states to provide community-based services for persons with disabilities. In that report, MCHB was charged with “developing and implementing a plan to achieve appropriate community-based service systems for children and youth with special health care needs and their families.” The work of our public-private partnership has moved to the highest levels of government. In fact, by 2003, every state has partially implemented community-based systems of care for CSHCN and their families.We believe today that “a medical home for every child” is not only 1 of our 6 core objectives but is critical to the success of our legislative requirements and the President’s New Freedom Initiative. How could we possibly create “community service systems” without every child having access to quality health care? Children with a readily accessible source of health care can receive early and continuous evaluations and early intervention and grow up healthy and ready to work. Community pediatricians can ensure children’s access to health care and work to coordinate with schools/child care services and other community resources for all children, and all families can become partners in our efforts.I identified adequate financing and reimbursement as our sixth performance measure—and indeed it is the bottom line. But insurance is not enough, and our National Agenda is built on the premise of “Build It and They Will Come.” As this country seeks solutions to health care financing, it is imperative that our public-private partnerships continue a concerted effort to put in place a system of universal/sustained services for all children based on quality and ease of access. Together we can, and we will.As I traced our common history, I have referenced a number of leading pediatricians who have played major roles in my life. In truth, the role of AAP and its leadership in these efforts is endless, and I could not possibly list or acknowledge them all, beginning with the long line of presidents who have supported this agenda; the board of AAP who have, through their leadership, made this national agenda a reality; the pediatric researchers who have helped build our database; and the pediatric educators who have translated this into FOPE 1 and 2 and into the Dyson initiative. The subspecialty groups have challenged us as we worked to clarify roles in our complex health systems and are actively engaged with us as we bring together an expert work group to examine our common concerns for a quality workforce. Most important are those practice pediatricians who have led the way as stellar medical homes and CATCH’ers. You are the modern day Dr Job Lewis Smiths, and I am deeply indebted for the opportunity given me to play a small role in helping to improve children’s health in this country and receive this wonderful award.Thank you so very much.

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