Make measurable what is not so: National monitoring of the status of persons with intellectual disability

Fujiura, Glenn T.; Rutkowski-Kmitta, Violet; Owen, Randall

doi:10.3109/13668250.2010.519330

Cited by 31 publications

(20 citation statements)

References 26 publications

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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%

Health Disparities of Adults with Intellectual Disabilities: What Do We Know? What Do We Do?

Krahn

Fox

2013

Research Intellect Disabil

230

184

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Background Recent attention to health of people with intellectual disabilities has used a health disparities framework. Building on historical context, the paper summarizes what is known about health disparities from reports and research and provide direction on what to do to reduce these disparities among adults with intellectual disabilities. Methods The present authors examined literature from 2002 to 2011 on health disparities and people with disabilities looking for broad themes on documenting disparities and on research approaches and methods. Results Multiple countries published reports on health of people with intellectual disabilities. Researchers summarized existing research within a health disparities framework. A number of promising methodologies are identified such as health services research, health indicators, enhanced surveillance and mixed-methods. Conclusions Strategies to reduce health disparities include use of data to educate decision makers, attention to social determinants and a life-course model and emphasis on leveraging inclusion in mainstream services where possible.

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Section: What Do We Know About Health Disparities Of People With Intementioning

confidence: 97%

Health Disparities of Adults with Intellectual Disabilities: What Do We Know? What Do We Do?

Krahn

Fox

2013

Research Intellect Disabil

230

184

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“…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%

Monitoring the prevalence of severe intellectual disability in children across Europe: feasibility of a common database

Bakel¹,

Einarsson²,

Arnaud

et al. 2013

Develop Med Child Neuro

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Aim Our aim was to study the feasibility of creating a framework for monitoring and undertaking collaborative research on intellectual disability at the European level, based on existing databases of children with such disability. Method The characteristics of five existing European intellectual disability databases from four countries (Iceland, Latvia, Ireland, and two in France), were discussed on the basis of ideal criteria set by a working group on childhood intellectual disability as part of the Surveillance of Cerebral Palsy in Europe Network (SCPE‐NET). Mean prevalence values for severe intellectual disability for the birth years 1990 till 2002 were compared across databases. Results Methods of case recruitment and diagnosis differed across databases, but classification of intellectual disability and completeness were similar. Severe intellectual disability (IQ<50) prevalence estimates were significantly (p<0.001) different across databases (south‐east France: 3.3 out of 1000; south‐west France: 3.0 out of 1000; Latvia: 3.9 out of 1000; Ireland: 5.0 out of 1000; and Iceland 5.1 out of 1000). Interpretation In spite of differences in diagnosis and case inclusion across databases, the construction of a common database for severe intellectual disability was deemed feasible through harmonization of certain criteria, such as age, and through restriction to those with severe intellectual disability.

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“…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%

Health Surveillance and People with Intellectual Disabilities

Fox

Bonardi

Krahn

2015

Health Disparities and Intellectual Disabilities

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Make measurable what is not so: National monitoring of the status of persons with intellectual disability

Cited by 31 publications

References 26 publications

Health Disparities of Adults with Intellectual Disabilities: What Do We Know? What Do We Do?

Health Disparities of Adults with Intellectual Disabilities: What Do We Know? What Do We Do?

Monitoring the prevalence of severe intellectual disability in children across Europe: feasibility of a common database

Health Surveillance and People with Intellectual Disabilities

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