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To put the magnitude of extant disability in the U.S. population into perspective, the year 2000 disability status report from the U.S. Bureau of the Census counted 49.7 million people with a chronic illness or disability. This figure accounted for 19.3% of the U.S. noninstitutionalized population ages 5 and older—or nearly one person in five (U.S. Bureau of the Census, 2003a). These figures do not include infants and children from birth to 5 years of age. Among the population from 5 to 15, about 2.6 million, or 5.8%, had disabilities, with boys representing a larger proportion of the total than girls. Overall, 5.2 million children and teenagers—one out of every 12—have a physical or mental disability. These numbers represent an increase over those in data collected previously. In addition, in this population, disabilities are more common among Native Americans and African Americans than among European and Asian Americans. According to Schonberg and Tifft (2002) and Batshaw (2002), 3–5% of births result in a congenital disability or genetic disorder.
Childhood disabilities range from high-incidence impairments to those that are less frequent in the population. High-incidence impairments in persons 6–21 make up 92% of impairments overall, including specific learning disabilities, speech or language impairments, intellectual disability, and serious emotional disturbance (U.S. Department of Education, 1996; Hunt & Marshall, 1999). Lower-incidence impairments, which for each condition constitute less than 2%, include multiple disabilities, hearing impairments, orthopedic impairments, other health impairments, visual impairments, autism, deafness–blindness, and traumatic brain injury. Furthermore, more than 6.3 million children and youth, ages 3–21, received special education services during the school year (U.S. Department of Education, 2002).
We suspect that these statistics provide a meaningful yet incomplete picture of the portion of the U.S. population that has a disability. In accumulating data from various sources, one should be mindful that there are differences in definitions of what constitutes a disability, differences in how data on multiple conditions are determined and counted, sampling method differences, and decisions that are made about when certain age groups are included/excluded (Olkin, 1999; Shapiro, 1994). This concern does not diminish the validity of the reported figures, but it does suggest that there may be even more people with disabilities than the figures indicate. These numbers indicate that persons with disabilities constitute the largest minority group in the United States (Olkin, 1999), and one that anyone can join at any time as a consequence of illness or accident. Actually, less than 15% of people with disabilities were born with their disability (Shapiro, 1994).
Dramatic improvements in medicine have benefited the existing population of infants, children, youth, and adults with disabilities. Enhanced methods of assessment and diagnosis, along with a greater awareness of symptoms by informed family members have increased the early identification and remediation of disabling conditions. By keeping people alive, and by keeping them alive longer, medicine has contributed to a disability population explosion (Shapiro, 1994). Such medical discoveries as chemotherapy for cancer, insulin for diabetes, and the methods to sustain low-birth-weight infants have kept people with impairments alive and functioning, yet often with disabilities.
Social change has not kept pace with clinical progress. People with disabilities remain at a disadvantage in relation to those without them in virtually every area of life. These individuals are much more likely to be unemployed, to live in poverty, and to remain at home rather than attending social functions. In addition, only 34% of those with disabilities say they are very satisfied with their lives, compared with 61% of those without disabilities (National Organization on Disability/Harris Survey of Americans with Disabilities, 2000). Children with disabilities also experience disadvantages in comparison with their nondisabled peers. For example, they are about twice or three times as likely as other children to be abused or neglected (National Clearinghouse on Child Abuse and Neglect [NCCAN], 2004). Eliminating such disadvantages requires societal-level changes to remove the structural and attitudinal barriers still faced by people with disabilities. Such interventions are often beyond the scope of professionals working with families on a one-to-one basis. Nevertheless, these professionals need to be aware of the effects of socially constructed barriers on the families they serve.
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