Measuring Prevalence of Childhood Disability: Addressing Family Needs while Augmenting Prevention

Journal of Rehabilitation,  April-June, 2001  by David Ehrenkrantz,  Corinne Miller,  Dee K. Vernberg,  Michael H. Fox

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The impact of disability among children is significant for parents, schools and communities. Families need to plan for proper supports to ensure success for children with disabilities, and long term planning is necessary to insure full participation in community life, including employment, social, and recreational opportunities. Additionally, children with disabilities typically require more medical and rehabilitation services than children without a disability, therefore planning programs to assure access to health care is necessary (Newacheck & Halfon, 1998). Accurately assessing the prevalence of disability among children is critically important, but very challenging due to the variety of ways in which disability has been defined and measured, as well as the various survey techniques which have been employed in past studies.

Adler, Clark, DeMaio, Miller, and Saluter (1999) describe the efforts of the Social Security Administration to modify prevalence questions developed by the US Census Bureau, so that they could ascertain disability prevalence for children, as well as for adults, and additionally gather information on various disability domains, such as sensory, mental, or physical. As Adler et al. observe, if this type of data were collected nationally on a regular basis, the implications would extend beyond their use for a census. Critical matters concerning policy and program evaluation could be addressed by a cross section of agencies as more extensive information on changes in prevalence and on the characteristics of people with disabilities would be collected. Adler et al. commend the efforts of other organizations for their attempts to gather information in that manner, including the Social Security Administration's study on working-age disability and the National Study of Health and Activity, formerly the Disability Evaluation Study.

President's Task Force on the Employment of Adults with Disabilities. Screening tools to assess prevalence of childhood disability are more effective if they inform rehabilitation professionals regarding the possible services the children or their families might require. As Glascoe (1999) observes, while screening tests exist which have improved disability detection rates, they have not been optimal due to their length, or the difficulty in managing the children's behavior during testing. She cites, as an alternative, the need to elicit and carefully assess the concerns of the parents. Such concerns have been evidenced by research to be as valid as quality screening instruments (Glascoe, Altemeier, & MacLean, 1989; Glascoe, MacLean, & Stone, 1991). She also observes that half of all children with disabilities are not identified before school entrance, which prevents their participation in early intervention programs. This information could also have value in reducing high school dropout rates, increasing employment, delaying child-bearing, and reducing criminal behavior (Barnett & Escobar, 1990; Glascoe, Foster, & Wolraich, 1997; Gomby, Lamer, Stevenson, Lewit, & Behrman, 1995). Accurate assessment could provide needed information on specifics such as the interaction for parents and siblings; accessing quality rehabilitative services dealing with both social as well as educational goals; and adequate accessing of health care needs to ensure that rehabilitation is maximized. Measures of access to health care services, their cost effect, and preventive/educational programming are vital for children with disabilities, not only to address the medical and rehabilitation needs of the child, but to ensure the viability of the family structure in which s/he is reared. Such an approach subsumes the longevity and societal integration of the child under its rubric, as well as the rehabilitation and normalization of the child's family members in preserving the integrity of their relationships.

Specifically, information on the nature of parent-child interactions, the mutual support systems between parents, the community support network, and their collective impact on the child's functional status and community integration should be available. While some information is available regarding non-disabled parents and their disabled children, relatively little has been published regarding disabled parents who have children with disability. Regarding non-disabled parents, Frey, Fewell, and Vadasy (1989) found a significant association between the father's adjustment to the child's disability at the start of observation, the mother's adjustment to the child's disability three years later, and the child's daily living skills and social competence three years later. Additionally, the study found higher levels of both parents' adjustment to be significantly associated with having a female with a disability as opposed to a male. This finding was in contrast to the study of Sloper and Turner (1993) who found that good paternal adjustment was associated with the child being male. Frey et al. suggest an emotional reciprocity between parents, which is largely dependent on the role of the father.