Skip over navigation

Journal Issue: Children with Disabilities Volume 22 Number 1 Spring 2012

The Changing Landscape of Disability in Childhood
Neal Halfon Amy Houtrow Kandyce Larson Paul W. Newacheck

Changing Contexts of Childhood Health and Disability

Contemporary notions of childhood disability contend that the nature and severity of disability are not only a product of underlying medical conditions but also a function of the demands, expectations, and social roles that children assume in their daily lives. Championing an integrated biopsychosocial perspective, the World Health Organization (WHO) in 2001 developed the International Classification of Functioning, Disability and Health (ICF), which describes how health conditions interact with personal and environmental factors to affect functioning at the levels of the body, the person, and the person in social situations. "Disability" is the umbrella term for impairments at the body level, activity restrictions at the person level, and participation restrictions at the person-in-society level. The ICF defines impairments as "problems in body function or structure such as a significant deviation or loss," activity limitations as "difficulties an individual may have in executing a task," and participation restrictions as "problems an individual may experience in involvement in life situations."8 Personal and environmental factors that influence functioning are considered contextual factors. In 2007 the WHO released the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY) in response to the specific and unique aspects of disability in childhood. For children, disability is also explained in the context of delays, deviations, and variations in expected growth and development.9

Primarily a classification scheme, the ICF does not provide a formal definition of disability. Subsequent work by the UN Convention on the Rights of Persons with Disabilities led to the development and adoption of a new definition of disability in 2010 that is built on the ICF framework. This definition is contained in Article 1 of the UN convention: "Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others."

The UN convention now has 149 countries as signatories, including the United States. Its inclusive definition of disability takes into account the impact of barriers created by the physical and social environments and emphasizes the importance of ensuring individuals' equal participation in society. Although this definition does not incorporate a direct reference to the evolving developmental needs of children, the general principles contained in Article 3 include: "Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities."10

The ICF framework and the U.N. convention definition of disability represent a new synthesis of two previously competing disability models—the medical model and the social model. The medical model of disability is aligned with biomedical notions of health and disease, attributing alterations in function to pathological changes in the individual.11 The biomedical understanding of disability reduces impairments to categories of disease and deficiencies. The focus is on patients instead of persons in their environments.12 In the medical model, disability is defined by the manifestations of health conditions in the form of anomalies of structure or function. Biological dysfunction may be amenable to medical interventions.13 This model remains pervasive in medical care and persists as the basis for eligibility for many public programs.

In contrast, the social model perceives disability as a social construct defined by social role function, practices of inclusion and exclusion, and discrimination.14 In a perfect world where the physical environment is accessible to all and where social attitudes and public policies are embracing and inclusive of all individuals, regardless of impairment, the experience of disability would not exist.15 From this vantage point, society limits full participation of people with impairments through discriminatory policies, inadequate environmental adaptations, and social ostracism. From the social model perspective, the focus of study is not the individual but social and environmental barriers.16 By considering both the medical and social perspectives, the ICF framework and the UN convention conceive of disability as a manifestation of the interaction between individuals and the context in which they live. Instead of a simple dichotomy, disability is understood as a dynamic continuum, influenced by biology, social factors, environmental conditions, health services, and personal preferences.17

The Changing Context of Childhood and Impacts on Health
Over the past century, enormous shifts have affected the social and cultural scaffolding that supports children's development and have also influenced the occurrence of chronic health conditions that can result in disability. These shifts include changes in demographics, the decline of some environmental toxins and the rise of others, new media and information technology that affects human relationships and perceptions, and advances in medical care technologies that have changed patterns of mortality and morbidity.

Between 1900 and 2000, the population in the United States tripled, but the birth rate dropped dramatically, from 32.2 to 14.4 births per 1,000 persons.18 Women are having fewer children, and first pregnancies are occurring at an older age.19 Demographically, children are more diverse, with several states now having or nearing a majority population that is of "minority" racial or ethnic background.20 Children are now far more likely than ever before to reside in cities, live in smaller families, often with a stepparent and step- or half-siblings, and to spend part of their childhood with a single parent.21 More than 20 percent of children in the United States live in impoverished households, and nearly half live in low-income families that are stressed to meet the needs of the modern child.22 In sum, many children live in social environments that limit their full inclusion and participation in the social world.23

Changing exposure to potentially toxic chemicals has also shifted the profile of risk for a range of health outcomes. Exposure to some environmental toxins such as lead, which can cause neurodevelopmental disorders, and air pollution, which is implicated in a range of maladies, has decreased over recent decades. But an expanding list of new environmental toxins has been implicated in the growing number of children with neurodevelopmental disorders.24 Exposures to these toxins may occur during critical periods of development (prenatal, early childhood, adolescence) when children are particularly sensitive to the disruptive nature of these chemicals and may lead to alterations in functional potential that may be compounded in ways that amplify their consequences over time.25

Changes in the cultural framework that guides children's growth and development may result from large-scale social changes, such as the introduction of television in the 1950s and the personal computer in the 1980s, or from more gradual changes, such as the progressive lessening of the amount of outdoor playtime that children experience. These subtle and not-so-subtle changes shape how children grow, develop, and function. Not only are today's children less active and spending less time outdoors, factors implicated in the rapidly rising rates of childhood obesity, but they are also exposed to a continuously increasing stream of information and electronic stimuli, giving them a wide range of experiences in a matter of weeks that their counterparts a century ago might not have experienced in a lifetime.

The dominant role that electronic media play in children's lives represents a tectonic shift in underpinnings of human health development. Researchers are just beginning to understand how various forms of electronic media are influencing and potentially disrupting neural development.26 Studies document growing rates of exposure to TV and videos at earlier ages and for longer periods of time. Appropriate use of media clearly can have a positive influence on children's health development. But recent studies also demonstrate that early and excessive viewing of television can have negative impacts on cognitive development and that playing certain kinds of video games is associated with changes in frontal lobe function, aggression, and impulse control, and is related to other behavioral problems.27 With increasing numbers of children diagnosed with disabling mental and behavioral disorders, the role and impact of growing rates of exposure to all kinds of media are unanswered questions of growing concern.

Concurrent with dramatic shifts in the social, cultural, physical, and technological world of the modern child are rapid advances in health and health care. Large declines in infant mortality attributable to a combination of improved living conditions and health interventions such as vaccinations, prenatal care, and the use of antibiotics have decreased morbidity and increased life expectancy.28 Medical and surgical advances, including improvements in neonatal care and management of previously fatal conditions such as congenital heart disease and cystic fibrosis, mean that more children with severe health conditions are surviving but also that many of them are at increased risk for chronic morbidity and disability.29

Irrespective of these significant improvements in medical care and living conditions (or in some cases, perhaps because of these improvements), diagnoses of childhood chronic health conditions such as asthma, autism, attention-deficit/hyperactivity disorder (ADHD), and obesity have been rising over the past several decades. So too has there been an increase in the number of children designated as having a more generically defined "special health care need."30 Many of the chronic health conditions children experience today are associated with activity limitations and participation restrictions in their community, limitations that can profoundly influence children's lives.31 Advances in medical care have been associated with a broadening of the purview on what constitutes a health condition, the age when diagnoses are rendered, how diagnostic criteria are applied, and expectations for what constitutes healthy development.

Changes in the physical, chemical, social, psychological, cultural, and health care environments of children are continuous, dynamic, and cross-cutting. Epidemiologic studies and studies of basic mechanisms are attempting to determine the relationships between specific exposures and observed outcomes (for example, between organophosphates and autism, bisphenol and obesity, violent video games and antisocial behavioral disorders). As one considers the prevalence and impact of childhood disability, one must also consider these many and varied changes in children's environment as they relate either to the underlying health conditions that result in impaired functioning, or to the adaptive capacity of the child, family, and society to respond to distress and impairment.

The Social and Policy Response to Childhood Disability
As the constellation of risk and protective factors that influence child health and disability continues to evolve, so too does society's response. For centuries, disability was understood as a characteristic of an individual. In Western cultures, from ancient Greece until the rise of modern medicine, disability was often interpreted as evidence of God's dismay.32 Until the Enlightenment period, the birth of a disabled infant was perceived as a palpable sign of parental sin. Disability also fed into notions of biological fitness, and the social ills associated with "feeble mindedness," or "degenerative and defective hereditary qualities," evolved in the early twentieth century into the rationale for eugenics and led to social policy that advocated forced sterilization of those considered unfit. As pathology, disability was deemed amenable to identification, characterization, and treatment for cure or management.33 Children with disabilities were often shunned, removed from their families, and treated, and often warehoused, in specialized institutions. Not until the 1950s, when deinstitutionalization began, did children with disabilities begin to be viewed in a different light. Social forces such as the civil rights and women's movements and President John Kennedy's Panel on Mental Retardation in 1961 helped bring issues faced by people with disabilities to the national policy stage, ushering in a new era of understanding disability.34 Inspired by his own family's experience with mental retardation, President Kennedy facilitated a new focus on the treatment and rehabilitation of individuals with mental retardation and other developmental delays. A federal law enacted in 1963, Public Law 88-156, provided new funding for children with mental retardation. In 1968 the Handicapped Children's Early Education Assistance Act (PL 90-538) provided funds for the first early intervention programs. The 1970s provided additional funding and focus for children with disabilities.

Social awareness of the challenges faced by children with disabilities and their families, coupled with advocacy by disability rights groups, continued to contribute to changes in disability policy at the federal and state levels in subsequent decades. Building on the Rehabilitation Act of 1973, the 1975 Education for All Handicapped Children Act (PL 94-142) provided the right to a full and appropriate education for all school-age children, regardless of the presence of a disability (see the article by Laudan Aron and Pamela Loprest in this volume).35 This law required public schools to evaluate all handicapped students and develop a plan, in conjunction with their parents, for educating these children in the same settings with typically developing children. At the time of enactment, more than 1 million children had no access to public education, and more than 3.5 million were segregated into special schools, often with no effective instruction.36 In 1986 Congress extended the 1975 law to infants, toddlers, and their families and set the basis for developing state-level early intervention programs for children with or at risk for developing disabilities. In 1990, reflecting a change in conception and terminology, the 1975 law was reenacted as the Individuals with Disabilities Education Act. IDEA has since been reauthorized on several occasions, and in 2009–10 some 6.5 million children, representing more than 13 percent of public school enrollment, received special education services.37

Despite the growing understanding of disability as a dynamic, socially constituted, and culturally mediated process that pivots on each individual's capacity to engage in culturally constituted social roles and realize his or her multidetermined developmental potential, many laws, policies, and programs related to disability require the identification of a specific medical condition for eligibility. For example, IDEA defines a child's eligibility for special education on the basis of thirteen disability condition categories; a child who is not diagnosed with one of these conditions is not eligible for special education, even though in other settings she might be considered as having a disability.38 Similarly, many states with special health care need programs for children use condition lists as a key determinant of eligibility for services. On the federal level, until 1990 individuals were eligible for assistance under the Supplemental Security Income (SSI) program only if they had one of a narrow set of specific impairments as determined by a medical examination. This requirement changed after a Supreme Court ruling in 1990 in the case of Sullivan v. Zebley added consideration of a child's developmental functioning as a criterion for eligibility for SSI benefits.39