2010
DOI: 10.3109/13668250.2010.519330
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Make measurable what is not so: National monitoring of the status of persons with intellectual disability

Abstract: The scope of ID data was dismal at best, though a significant statistical infrastructure exists for the integration of ID data. Advocacy will be necessary. There is no optimal form of data monitoring, and decisions regarding priorities in purpose, targeted audiences, and the goals for surveillance must be resolved.

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Cited by 31 publications
(20 citation statements)
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“…Consequently, public health was recognized as central to the ongoing dialogue on disability and health (Marge ; Lollar & Crews ; Fujiura et al . ). In both the United States and European Union, the health of people with disabilities was formally brought to the attention of public health through national and international reports or resolutions (Degener ; U.S. National Council on Disability, ; U.N. General Assembly ).…”
Section: What Do We Know About Health Disparities Of People With Intementioning
confidence: 97%
“…Consequently, public health was recognized as central to the ongoing dialogue on disability and health (Marge ; Lollar & Crews ; Fujiura et al . ). In both the United States and European Union, the health of people with disabilities was formally brought to the attention of public health through national and international reports or resolutions (Degener ; U.S. National Council on Disability, ; U.N. General Assembly ).…”
Section: What Do We Know About Health Disparities Of People With Intementioning
confidence: 97%
“…Although statistics are kept at the national or regional level in several European Union member states, the lack of standardization of definitions and in recruiting and including cases, 5 makes cross-country comparison of prevalence difficult, and the data may be of little use for planning, monitoring, and evaluation of national and regional policies. 6 Furthermore, the overall prevalence of intellectual disability is around 1% in Europe, but that of severe intellectual disability (including the moderate severe and profound categories, but excluding mild intellectual disability) is only 0.4%, 7 making the number of children in the latter group within one database insufficient for studying specific subgroup characteristics, examples of which include males born with a low birth weight, 8 the proportion of children with epilepsy frequenting mainstream school, and issues of aetiology 9,10 and social class distribution. 11 Different definitions, classifications, and ascertainment methods for intellectual disability that exist across the world continue to challenge the field of epidemiology.…”
Section: Discussionmentioning
confidence: 99%
“…However, as noted in the introduction, people with intellectual disabilities are rarely identifiable in existing health surveys (Fujiura, Rutkowski-Kmitta, & Owen, 2010;Linehan et al, 2009). Three approaches for improving the identification of respondents with intellectual disabilities are considered in the following subsections:…”
Section: Identifying People With Intellectual Disabilities In Populatmentioning
confidence: 99%