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Commentary From the Council on Children With Disabilities

October 13, 2023

Commentary From the Council on Children With Disabilities

The precursor of the American Academy of Pediatrics (AAP) Council on Children With Disabilities (COCWD) was established in 1935 as the Committee on Infantile Paralysis. Over the past nearly 80 years, the council has seen an enormous transformation in the understanding of child development and developmental disability and now counts more than 700 members who represent primary care and different specialties. The vision of COCWD is to work toward a world in which there is “optimal health, function, and development of children and youth with disabilities—in partnership with their families, providers, and communities—in all settings.” The council’s current mission of advocacy for individuals with disabilities, families, educators, and medical professionals through policy development, programming, and education, supporting career development for pediatricians, trainees, and other disability professionals at all career stages, and dissemination of trusted, accurate, and timely information relevant to the life course of individuals with disabilities seems particularly timely given high rates of mental health, behavioral health, and developmental conditions in children.

The COCWD is pleased to present these 3 commentaries for the Diamond Jubilee of Pediatrics. We have combed over the 75 years of the journal and marveled at the evolution of our field, and in particular, the improvement in medical care and support for children with disabilities.

First Quarter Century (1948 - 1973)

Developmental Pediatrics: Lessons Learned and Hopes for Neurodiversity and Equity

Jamie Rabot, MD1, Michael C. Granovetter, PhD2, Michael E. Msall, MD, FAAP3, Katharine Zuckerman, MD, MPH, FAAP4

Affiliations: 1Child Development and Rehabilitation Center, Institute on Development and Disability, Oregon Health & Science University, Eugene, OR; 2University of Pittsburgh School of Medicine, Pittsburgh, PA; 3The University of Chicago Medicine, Comer Children’s Hospital and JP Kennedy Research Center, Section of Developmental and Behavioral Pediatrics, Chicago, IL; 4Division of General Pediatrics, Oregon Health and Science University, Portland, OR

Highlighted Articles From Pediatrics

As the council celebrates the 75th anniversary of Pediatrics, we are reminded to look back and reflect on how the field of developmental and behavioral pediatrics has evolved. While the field is relatively young, there has been tremendous growth in research within the discipline in the past few decades that has provided practical guidance to clinicians about the diagnosis and treatment of children with developmental disabilities. To emphasize the growth of this field we highlight 4 historic articles: one by Gesell in 1948,1 the second by Ames in 1965 on interdisciplinary care,2 the third by Tanguay in 1973 on autism,3 and the fourth by Hess in 1953 on the long-term outcomes of preterm infants.4

The first article by Gesell was entitled “Developmental Pediatrics: Its Task and Possibilities,” and was presented on December 10, 1947, at the AAP annual meeting in Dallas.1 Gesell’s 1948 article was a call for primary care pediatricians to embrace assessment of child development, surveillance of developmental maturation, and promotion of optimal development as critical missions He emphasized the importance of pediatricians collaborating with parents starting in the prenatal period in order to understand parental perspectives within psychosocial, cultural, and developmental frameworks.

Gesell viewed the first 5 years of life as critical to a child’s long-term physical, developmental, behavioral, and social health. He highlighted the value of integrating physical and developmental medicine in the context of biological risk and the science of child development. The latter included systematic observations of gross motor, fine motor, communicative, problem-solving, social-emotional, and adaptive skills. These observations were protocolized for reliability based on longitudinal observations of representative numbers of typically developing children and captured in cinematographic recordings. Gesell also recognized the critical role of monitoring somatic, cranial, and developmental growth over time. Both developmental milestones and physical growth parameters are now embedded in well childcare through the AAP Bright Futures program.

Gesell viewed the science of development to be grounded in embryology, genetics, neuroscience, anthropology, and culture. He articulated partnering with parents and communicating with parents in a sensitive way to address concerns (feeding, sleep, behavior) and to describe a child’s developmental status as reassuring, at risk, or delayed. He advocated for early intervention programs for children with cerebral palsy, blindness, deafness, epilepsy, developmental disabilities, and specific communicative, learning, and behavioral disorders. He called for a dynamic interactive parent support framework and deplored rigid behavioral, social, or political ideologies. He felt that developmental pediatricians could benefit from observing a child at home as well as in daycare, preschool, and child development center sites. In his conception, these sequential observations would help inform the pediatrician about the child’s risk and resiliency and parenting practices and allow more focused promotion for the child’s healthy development. In contrast to misinformed practices of treating children as miniature adults and managing physical health in isolation from children’s developmental and behavioral health, Gesell presented an integrated view of physical and developmental growth that was groundbreaking at the time. These tasks remain as essential today as they were 75 years ago.

It is also noteworthy how bridging silos across the home and school environments and the sites of medical and mental health care has impacted how we approach diagnosis and treatment of developmental disabilities. In a seminal communication published in Pediatrics in 1965, Dr. Mary Ames put forward a novel proposal that advocated for an interdisciplinary healthcare team to oversee the community care of children with disabilities.2 In the article, she described the fragmented approach to care that existed for children with disabilities at that time by noting the siloed diagnostic workup and assessment of individual specialists. Dr. Ames emphasized the critical importance of whole child and family supports for independence and discussed in detail the value of these approaches for children with spina bifida, cerebral palsy, sensorineural hearing loss, and visual disability. It is surprising that an interdisciplinary coordinated care approach for children with disabilities in the community was a novel proposal half a century ago. Today, her vision of pediatric coordinated holistic care to children with disabilities is a core objective of many pediatric centers across the United States. Although her vision has been realized, it is important to recognize the barriers to such care that still exist for many children with developmental disabilities. A recent report from the Centers for Disease Control and Prevention highlighted that access to specialty care for children with developmental disabilities differed significantly as a function of race or ethnicity, socioeconomic status, and region of residence.5 This reminds us that advocacy and involvement in equity are continued parts of community pediatrics.

Tanguay’s article outlines principles that can guide pediatricians to provide the best care for children with autism spectrum disorders.3 Today, we recognize how complex the journey has been to understand this diverse group of children. At the time it was published in 1973, there had already been a shift from considering autism as a psychological disorder to one with a neurobiological basis. The past few decades have witnessed a surge in research that has attempted to determine the contribution of genetic factors. These efforts have identified nearly 100 different genes that contribute to autism risk as well as the complexity of population-based precision medicine in neurodevelopmental disorders.6-9

As our understanding of autism has evolved, we have refined diagnosis and treatment. We now recognize that autism is best considered to be a spectrum that recognizes variation across different individuals. Behavioral treatments have changed from those that included punitive components (some discussed in the article), to those that are now based on the principle of positive behavior support as well as social-relational approaches. Furthermore, the concept of self-determination is at the center of planning these interventions.

Our fourth article, by Hess, emphasizes the value of family-centered care, developmental surveillance, and advocacy over the life course for children who survive after preterm birth.4 This life-course outcome study followed nearly 450 survivors with birthweights between 600 and 1,250 grams over 30 years, who had received care at the Michael Reese Hospital in Chicago between 1920 and 1950. It highlighted high rates of death but also the resiliency of many survivors, including their subsequent success in school and employment. In particular, several survivors served in World War II, and many adult women completed high school, worked, married, and raised children. This article emphasizes that developmental pediatrics must continually integrate physical, developmental, and behavioral health components into a unified approach over epochs of preschool, middle childhood, adolescence, and adulthood. Hess and his team meticulously described growth, physical health status, and parenting community supports and their effects on long-term child functioning with respect to mobility, vision and hearing, learning, and vocational success. These data also comprehensively describe children cared for in the neonatal intensive care unit and the critical importance of regionalization, early transport, nutrition, infection control, neurodevelopmental surveillance linked to home visiting, parenting supports, and educational participation in optimizing outcomes. Hess’s summary tables help us appreciate that longitudinal multidimensional outcomes provide the critical data to understand risk and resilience with the goal of optimizing child functioning and family well-being.

Although we recognize that research has produced many positive changes for most individuals and families affected by developmental disabilities, we clearly have much progress to make. Thus, while specialists are no longer siloed from one another, interdisciplinary centers may be geographically or financially siloed from communities that need them. Further advocacy to make coordinated care accessible and affordable for all children with disabilities, including those from marginalized population groups, must be a continued priority for pediatricians. Moreover, the commitment to support policies that sustain funding for medical homes, best education practices, provisions of mental health care to children, and specialized training of care providers must continue.

As we increase knowledge about how the genome modulates the phenotype of development, the understanding and treatment of autism and other developmental disorders and the neuroprotection of the preterm brain are certain to evolve and improve. What has not changed is emphasis on the early identification of children with or at risk for developmental disability in order to initiate meaningful interventions that improve their lives and the lives of the people who care for them.


  1. Gesell A. Developmental pediatrics: its task and possibilities. Pediatrics. 1948;1(3):331-336
  2. Ames Proposals for a department of rehabilitation for children. Pediatrics. 1965;36(2):277-281
  3. Tanguay P. A pediatrician’s guide to the recognition and initial management of early infantile autism. Pediatrics. 1973;51(5):903-910
  4. Hess JH. Experiences gained in a thirty year study of prematurely born infants. Pediatrics. 1953;11(5):425-434
  5. Cogswell ME, Coil E, Tian LH, et al. Health needs and use of services among children with developmental disabilities–United States, 2014-2018. MMWR Morb Mortal Wkly Rep. 2022;71(12):453-458
  6. Gordon J. Progress and priorities in autism research: it’s beginning to feel a lot like springtime. National Institute of Mental Health; 2019
  7. Chen GT, Geschwind DH. Challenges and opportunities for precision medicine in neurodevelopmental disorders. Adv Drug Deliv Rev. 2022;191:114564
  8. Hong D, Iakoucheva LM. Therapeutic strategies for autism: targeting three levels of the central dogma of molecular biology. Transl Psychiatry. 2023;13(1):58. Erratum in: Transl Psychiatry. 2023;13(1):80
  9. Woolfenden S, Farrar MA, Eapen V, et al. Delivering paediatric precision medicine: genomic and environmental considerations along the causal pathway of childhood neurodevelopmental disorders. Dev Med Child Neurol. 2022;64(9):1077-1084

Second Quarter Century (1973 - 1998)

Re-envisioning a Meaningful Future for Children With Disabilities: 1973 - 1998

Alexis Tchaconas, MD, FAAP1, Garey Noritz, MD, FAAP2, Kathleen Huth, MD, MMSc, FAAP3

Affiliations: 1Resident Physician, Departments of Internal Medicine and Pediatrics, Icahn School of Medicine at Mount Sinai, New York NY; 2Professor of Pediatrics, Nationwide Children’s Hospital and The Ohio State University College of Medicine, Columbus, OH; 3Assistant Professor of Pediatrics, Boston Children’s Hospital and Harvard Medical School, Boston MA

Highlighted Articles From Pediatrics

  1. Stein SC, Schut L, Ames MD. Selection for early treatment in myelomeningocele: a retrospective analysis of various selection procedures. Pediatrics. 1974;54(5):553-557
  2. Kanthor H, Pless B, Satterwhite B, Myers G. Areas of responsibility in the health care of multiply handicapped children. 1974;54(6):779-785
  3. Hughes JR, Grayson R, Stiles FC. Fragmentation of care and the medical home. 1977;60(4):559
  4. Healy A. Treatment of disabled infants. Pediatrics. 1984;73(4):563-564
  5. Committee on Fetus and Newborn. The initiation or withdrawal of treatment for high-risk newborns. Pediatrics. 1995;96(2):362-363
  6. Duff RS. Counseling families and deciding care of severely defective children: a way of coping with ‘Medical Vietnam’. Pediatrics. 1981;67(3):315-332
  7. Council on Children with Disabilities. Transition of care provided for adolescents with special health care needsPediatrics. 1996;98(6):1203-1206

The middle 25 years of Pediatrics witnessed great improvement in the treatment of and respect for children with disabilities. We could have chosen many articles to illustrate this evolution, but selected those that best demonstrated a shifting philosophy that began to embrace progress toward building a future for children with disabilities and to reject ableism that led to “prognostic fatalism”*: the self-fulfilling prophecy that certain people will have poor outcomes, and thus should not be provided life-sustaining care.

In the mid-1970s, several articles, exemplified by Stein’s 1974 article, contended that the active treatment of children at risk for disability should be reserved for those babies most likely to have a “positive” outcome, defined as the absence of “mental retardation” (accepted term at the time for an IQ <80).1 Stein conducted a retrospective analysis of 163 children born at a single center, all of whom underwent early repair of their myelomeningocele. Variables that predicted an IQ <80 included the presence of lacunar skull deformities on x-ray, a thoracolumbar defect, paraplegia, gross hydrocephalus, or kyphosis. The authors concluded that early surgery should not be recommended for children in whom a “poor” prognosis was predicted, and most would die without surgery. Other articles of this era explored decision-making in “defective” newborns and advocated that usual care should be withheld for children with disabilities, including denying surgery to infants with Down syndrome for correction of duodenal atresia. We believe that these authors genuinely thought they were trying to limit what they perceived as unnecessary suffering of children and families, but clearly an ableist lens colored their approach.

Kanthor et al in 1974 highlighted the lack of adequate care coordination for children with disabilities that contributed to poor outcomes.2 These authors interviewed 44 mothers of children with spina bifida and asked whether these mothers identified primary care physicians or pediatric subspecialists as the point person for various aspects of their child’s health care, including “evaluation and treatment of chronic disease, advice, future planning, genetic counseling, coordination, emotional support, education, acute illness and well-child care.” They found that there was generally a lack of clear responsibility outside of well-child care, acute illness, and chronic disease management, and no sense of “overall direction” to care. This realization prompted efforts to incorporate care coordination within primary care and deem it the “medical home,” as proposed by Hughes in 1977.3 In this quarter-century, we see a new recognition that a child’s outcome reflects their system of care and its integration as much as the diagnosis or disability itself.

In 1984, Healy discussed the policy statement “Principles of Treatment of Disabled Infants,” which had recently been published by the AAP and 8 other professional organizations.4 The statements here presage some of our current thinking on the rights of individuals with disability and our professional responsibility to them. This statement was written while the “Baby Doe” cases were still being considered in court. There are strong declarations here in support of active treatment of all people who might benefit from it: “When medical care is clearly beneficial, it should always be provided. Considerations such as anticipated…limited potential of an individual… must not determine decisions regarding the provision of medical care.” Healy also highlighted that any care team members caring for children with disabilities “need to possess contemporary information regarding the life outcomes and value and worth of persons with disabilities,” denoting the professional responsibility to promote awareness to combat ableism. Continuing education in the care of children with disabilities is still critical. Pediatricians have a responsibility to stay current as evidence evolves and to understand what families believe is most important for the care of their child.

In 1995, the Committee on Fetus and Newborn published a policy statement that approximates our current thinking about the treatment of children at the edge of viability and recognized that some may survive with disability.5 The authors called for an “individualized prognostic strategy,” as we still do today. Each child undergoes an individual evaluation to consider both what is known and uncertain about the infant’s prognosis. The statement argued strongly to engage parents and other family caregivers in what we today term “shared decision-making” and recognized that families have diverse cultural, religious, and educational backgrounds that influence their decision-making. We began to see patient and family voices as important in achieving treatment consensus in a departure from more paternalistic approaches espoused by Duff et al in 1981.6 The Council on Children with Disabilities, in collaboration with a Family Voices liaison representative, published a policy statement in 1996 about transitioning care for adolescents with special health care needs, which recognized the importance of planning for the future of these young adults.7 The statement identified opportunities for the primary care pediatrician not only to advocate for these patients as they transition to adult-oriented health care systems but also to foster their independence, assist them with accessing insurance, and facilitate their enrollment in appropriate vocational training.

What further evolution has occurred between 1995 and today? For one, there is a growing recognition that ableism is one of society’s many ills and contributes to unacceptable health disparities. If children with or at risk for significant disability are not provided the same standard of care as others, their “poor” prognosis will certainly come to pass. If clinicians do not partner with patients and families in decision-making and in defining important outcomes, ableism will continue to pervade systems of care. Lifted by shared-decision making, team-based care, and systemic support, children with disabilities can thrive within their families and communities, realize their individual potentials, plan for a meaningful future, and bring immeasurable value to society.

*Term suggested by Chris Feudtner, MD, PhD, MPH

Third Quarter Century (1998 - 2023)

Cultivating Complex Care: Landmark Articles From the Past 25 Years of Pediatrics

Emily Goodwin, MD1, Kilby Mann, MD, FAAP2, Kristina Malik, MD, FAAP3

Affiliations: 1General Academic Pediatrics, Beacon Program, Associate Professor of Pediatrics, Children’s Mercy Kansas City, University of Missouri Kansas City School of Medicine, Kansas University Medical Center, Kansas City, MO; 2Department of Physical Medicine and Rehabilitation, Children’s Hospital Colorado, University of Colorado, Aurora, CO; 3Department of Pediatrics, Children’s Hospital Colorado, University of Colorado, Aurora, CO

Highlighted Articles From Pediatrics

Pediatrics has always given children with disabilities and the medical providers who care for them the space to publish research important to this population. Looking at literature over the past 25 years, this most significantly translated into space to identify and define children with medical complexity (CMC). Cohen et al in 2011 authored an especially prominent article that identified CMC as a population that could benefit from research initiatives and clinical advancement.1

Pediatrics has continued to advocate for and advance aspects of care important to this population and educate pediatricians who provide this care. Pediatrics has provided a platform that has continuously updated health supervision recommendations with respect to children with special health care needs including achondroplasia,2-4 neurofibromatosis,5 Down syndrome,6,7 autism,8 and cerebral palsy.9,10 In addition, Pediatrics has supported pediatricians in giving guidance to children with disabilities about achieving healthy sexuality.11

Pediatricians have moved beyond defining CMC and embarked on determining best practices to care for this patient population. More recent publications have recognized unique treatment options that have improved outcomes and care for CMC/children with disabilities, including the recognition that children with neurodevelopmental impairment can benefit from a targeted pain assessment workup12 and that telehealth offers novel opportunities to improve patient outcomes.13


  1. Cohen E, Kuo DZ, Agrawal R, et al. Children with medical complexity: an emerging population for clinical and research initiatives. Pediatrics. 2011;127(3):529-538
  2. Committee on Genetics. Health supervision for children with achondroplasia. Pediatrics. 1995;95(3):443-451
  3. Trotter TL, Hall JG, Committee on Genetics. Health supervision for children with achondroplasia. Pediatrics. 2005;116(3):771-783
  4. Hoover-Fong J, Scott CI, Jones MC, Committee on Genetics. Health supervision for people with achondroplasia. Pediatrics. 2020;145(6):e20201010
  5. Hersh, JH, Committee on Genetics. Health supervision for children with neurofibromatosis. Pediatrics. 2008;121(3):633-642
  6. Bull MJ, Committee on Genetics. Health supervision for children with Down syndrome. Pediatrics. 2011;128(2):393-406
  7. Bull MJ, Trotter T, Santoro SL, Christensen C, Grout RW, Council on Genetics. Health supervision for children and adolescents with down syndrome. Pediatrics. 2022;149(5):e2022057010
  8. Hyman SL, Levy SE, Myers SM, Council on Children with Disabilities, Section on Developmental and Behavioral Pediatrics. Identification, evaluation, and management of children with autism spectrum disorder. Pediatrics. 2020;145(1):e20193447
  9. Liptak GS, Murphy NA, Council on Children With Disabilities. Providing a primary care medical home for children and youth with cerebral palsy. Pediatrics. 2011;128(5):e1321-e1329
  10. Noritz G, Davidson L, Steingass K, Council of Children with Disabilities, The American Academy for Cerebral Palsy and Developmental Medicine. Providing a primary care medical home for children and youth with cerebral palsy. Pediatrics. 2022;150(6):e2022060055
  11. Houtrow A, Elias ER, Davis BE, Council on Children with Disabilities. Promoting healthy sexuality for children and adolescents with disabilities. Pediatrics. 2021;148(1):e2021052043
  12. Hauer J, Houtrow AJ, Section on Hospice and Palliative Medicine, Council of Children with Disabilities. Pain assessment and treatment in children with significant impairment of the central nervous system. Pediatrics. 2017;139(6):e20171002
  13. Mosquera RA, Avritscher EBC, Pedroza C, et al. Telemedicine for children with medical complexity: a randomized clinical trial. Pediatrics. 2021;148(3):e2021050400
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