Opportunities for Improving Programs and Services for Children with Disabilities (2018) / Chapter Skim
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2 Conceptualizing Childhood Disability
2 Conceptualizing Childhood Disability
Pages 29-72
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From page 29... ...
. Thus, the committee examined childhood disability from a biopsychosocial perspective in which disability results from the interaction of an individual's health conditions with personal and environmental factors that result in limitations in activities and participation.
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by reason of any medically determinable physical or mental impairment(s) which can be expected to result in death or which has lasted or can be expected to last 1 Americans With Disabilities Act of 1990, Public Law 101-336, § 12102, 104 Stat.
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health and physical well-being."3 SSA uses a focused definition of disability because the program is not intended, nor does it have the financing, to serve all children with disabilities -- only those with the most severe disabilities whose family income is such that the cost of providing care would otherwise be out of reach. In December 2016, SSI provided income support to approximately 1.04 million children aged 6–17 with disabilities (2.0 percent of the total U.S.
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0.1 0.1 Injuries 0.6 0.5 0.4 Mental disorders Autistic disorders 18.1 17.2 11.6 Developmental disorders 29.3 22.4 16.3 Childhood and adolescent disorders not 2.6 21.0 25.8 elsewhere classified Intellectual disability 3.0 8.4 15.2 Mood disorders 0.2 2.0 6.2 Organic mental disorders 2.9 2.3 2.1 Schizophrenic and other psychotic disorders (L) 0.1 0.5 Other mental disorders 1.6 0.9 0.7 Neoplasms 1.6 0.9 0.7 Diseases of the Blood and blood-forming organs 1.1 1.0 0.9 Circulatory system 0.6 0.3 0.3 Digestive system 3.2 0.7 0.4 Genitourinary system 0.3 0.2 0.2 Musculoskeletal system and connective tissue 1.1 0.7 0.7 Nervous system and sense organs 10.3 8.2 6.8 Respiratory system 3.2 2.0 1.6 Skin and subcutaneous tissue 0.3 0.2 0.1 Other 9.1 2.9 2.4 Unknown 1.3 1.1 1.0 NOTES: All numbers are reported as percentages; (L)
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6.5 21.9 17.6 Conduct disorder 3.0 4.4 5.3 Emotional disturbances 1.9 5.2 6.8 Oppositional defiant disorder 1.0 4.3 5.8 Depression 0.6 3.8 8.7 Bipolar disorders 0.2 1.9 4.6 Anxiety disorders 0.7 2.0 2.3 Autism spectrum disorders 7.9 7.8 5.2 Intellectual disorders 2.9 6.3 7.6 Speech and language disorders 20.7 15.3 5.8 Hearing disorders 19.8 8.6 4.6 Learning disorders 12.1 7.4 4.4 Cerebral palsy 7.3 6.0 5.0 Asthma 12.8 8.8 5.5 Sample size 72,940 193,479 212,403 NOTES: Inclusion criteria: youth aged 3–17 with 11+ months of Medicaid eligibility and no dual eligibility in the year. A diagnosis was established based on the presence of one or more inpatient or two or more noninpatient claims with qualifying International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM)
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. Because of this legislative mandate to identify children who require special education services to access FAPE, there are many more children with disabilities and severe health impairments or special health care needs than are served under IDEA.
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. Maternal and Child Health Bureau A separate concept, but one related to disability, is that of children with special health care needs (CSHCN)
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, there exists a subset of children and adolescents with chronic health conditions who are se verely affected or medically fragile and have multiple, complex, and intensive needs, including support for feeding, respiration, and mobility. This subset has traditionally been known by many terms, including children with "complex chronic conditions" and the more recently adopted "children with medical complexity" or CMC (Cohen et al., 2011)
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The National Health Survey Act of 1956 appropriated funding for a continuous survey of the health of the nation's civilian, noninstitutionalized population. Since 1957, the National Health Interview Survey (NHIS)
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estimate that approximately 4.6 million children aged 6–17 had a disability related to chronic conditions. Between 2001 and 2010, the National Survey of Children with Special Healthcare Needs (NS-CSHCN)
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Data from the 2011–2012 survey suggest that 20 percent of children (approximately 14.6 million children) had a special health care need under the MCHB definition (Kids Count Data Center, 2013)
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. These discrepancies can be traced back to the underlying questions guiding data collection; specifically, broader definitions aim to identify what special health care needs are and how to address them, while narrower definitions (e.g., SSI, IDEA)
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, data from most programs and surveys are not categorized in this way. Accordingly, prevalence estimates presented in this section generally represent school-aged children aged 6–17,14 underrepresenting the 14 IDEA includes data on youth who continue to receive special education services through age 21; however, youth aged 18–21 represent only approximately 5.7 percent of the total U.S.
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FIGURE 2-1 Prevalence of childhood disability based on selected definitions. NOTE: ACS = American Community Survey; IDEA = Individuals with Disabilities Education Act; NHIS = National Health Interview Survey; NSCH = National Survey of Children's Health; SSI = Supplemental Security Income.
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. It recognizes that impairment does not equal disability; rather, disability results from the complex interplay between impairments and personal and environmental factors, and is best understood in terms of activities (execution of a task by an individual)
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Programs • Education And • Daily Living Skills Child Services • Communication and Social Skills Family • Employment and Earnings • Independent Living • Community Participation • Self-Determination Environmental Factors FIGURE 2-3 Interplay of services and programs, personal characteristics, environmental factors, and child health outcomes.
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As outcomes are achieved, they, in turn, affect the child's personal and environmental factors that influence the need for and impact of subsequent services. Life Course Perspective and the Role of Personal, Social, and Environmental Factors Multiple scientific streams have contributed to the development of life course theory, which posits that events early in life can influence biological systems in ways that have lifelong effects, and that these effects may vary depending on the timing of the exposure to such events in relation to the child's developmental stage (Alwin, 2012; Elder, 2000; Halfon et al., 2014a)
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As mentioned, children with medical complexity (those with r chronic health conditions who are severely affected or medically fragile and have multiple, complex, and intensive needs) require frequent, recurrent engagement with health care services (Ireys et al., 1997)
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. According to the 2016 National Academies report referenced earlier, speech and language disorders are particularly difficult to estimate given that approximately 40 percent of children with speech and language disorders in nationally representative studies have serious comorbidities such as intellectual disabilities, autism spectrum disorder, and other neurodevelopmental and behavioral disorders (NASEM, 2016)
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According to the 2009– 2010 NS-CSHCN, approximately 5.6 million children with special health care needs received 1.5 billion hours annually of family-provided health care, which equates to 5.1 hours weekly per child (Romley et al., 2017)
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. At present, NHIS data indicate that mental health conditions among children from racial and ethnic minorities are recognized by parents and are medically diagnosed less frequently than is the case among their racial/ ethnic majority peers.
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. In situations where the child is without a consistent caregiver who can teach developmentally appropriate life skills, children with disabilities -- particularly those with intellectual disabilities, neurodevelopmental disorders, or significant mobility limitations -- are at increased risk for falling behind their peers in the acquisition of daily living skills that are critically necessary to achieving independent living outcomes in the future (Bal et al., 2015; Smits et al., 2011; van Duijn et al., 2010)
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. Poverty is also associated with other social disadvantages, such as single parenthood, minority status, and limited education, which can have a cumulative effect on child health and disability (Bauman et al., 2006; Evans, 2004)
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. Many more children survive cancer as the result of advances in treatments, and technological advances also have allowed children with hearing impairment to receive cochlear implants, which can improve their hearing (Romig, 2017)
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. Nationally representative studies have shown that children with special health care needs who live in rural communities have limited access to pediatricians and face transportation barriers to seeking care, and consequently have higher levels of unmet need (Kelleher et al., 1992)
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, children who had been diagnosed with conduct disorders, psychological disorders, speech and language disorders, learning disabilities, or cerebral palsy16 were more likely than children diagnosed with autism spectrum disorder or sensory disabilities to have documented cases of child abuse or neglect (Spencer et al., 200517)
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compared with their peers without disabilities. One recent review of the research found that between 44 percent and 77 percent of children with autism spectrum disorders and/or their parents reported experiencing peer victimization in the previous month (Storch et al., 2012)
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. While recent research has begun to explore the immediate impact of stigma on child well-being, the long-term impact of perceived stigma may promote negative outcomes in the areas of independent living, civic participation, and community integration (Heflinger et al., 2014)
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in Cuyahoga County, Ohio, found that 32.5 percent of youth on probation had a special education disability classification (i.e., qualified for special education services) , 39.8 percent had a diagnosed mental health disorder, and 32.4 percent had a diagnosed substance abuse disorder (Mallett, 2009)
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Within the preschool program, he received special education services, regular sessions with the occupational therapist to promote fine motor development, and services with a speech pathologist to promote speech and language development. Despite these services, his speech was largely unintelligible, so he and his family were taught sign language.
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and N were initiated during their stay in the neonatal intensive care unit, starting with physical and occupational therapy services.
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and N have severe functional limitations, their disability services have
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In addition to the academic program, speech pathology, occupational therapy, and special education resources for reading and math were provided as part of his IEP. These services continued, and during primary school, J.P.
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and "autism spectrum" defining his special education e ligibility. Although this made sense from a programmatic standpoint in terms of the special education support he was receiving, it was rather confusing to the parents, who were not quite sure what his "diagnosis" should be other than ADHD.
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2012. Integrating varieties of life course concepts.
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2015. Daily living skills in individuals with autism spectrum disorder from 2 to 21 years of age.
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2002. Comorbidity of mental health problems and chronic health conditions in children.
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Rockville, MD: Maternal and Child Health Bureau. https://mchb.hrsa.gov/research/about-history.asp (accessed January 27, 2018)
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2004. A prospective analysis of the relationship between reported child maltreatment and special education eligibility among poor children.
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2009. Racial/ethnic disparities in the identifica tion of children with Autism Spectrum Disorders.
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:S392–S398. OSERS (Office of Special Education Research)
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2012. Peer victimiza tion in youth with autism spectrum disorders and co-occurring anxiety: Relations with psycho athology and loneliness.
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2014. Family impacts among children with autism spectrum disorder: The role of health care quality.
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