Literature DB >> 21117882

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

Glenn T Fujiura1, Violet Rutkowski-Kmitta, Randall Owen.   

Abstract

BACKGROUND: Statistics are critical in holding governments accountable for the well-being of citizens with disability. International initiatives are underway to improve the quality of disability statistics, but meaningful ID data is exceptionally rare.
METHOD: The status of ID data was evaluated in a review of 12 national statistical systems. Recurring data collection by national ministries was identified and the availability of measures of poverty, exclusion, and disadvantage was assessed.
RESULTS: A total of 131 recurring systems coordinated by 50 different ministries were identified. The majority included general disability but less than 25% of the systems screened ID. Of these, few provided policy-relevant data.
CONCLUSIONS: 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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Mesh:

Year:  2010        PMID: 21117882     DOI: 10.3109/13668250.2010.519330

Source DB:  PubMed          Journal:  J Intellect Dev Disabil        ISSN: 1366-8250


  5 in total

Review 1.  Health disparities of adults with intellectual disabilities: what do we know? What do we do?

Authors:  Gloria L Krahn; Michael H Fox
Journal:  J Appl Res Intellect Disabil       Date:  2013-07-31

2.  The 1994-1995 National Health Interview Survey on Disability (NHIS-D): A Bibliography of 20 Years of Research.

Authors:  Brian W Ward; Heather Ridolfo; Lauren Creamer; Caroline Gray
Journal:  Rev Disabil Stud       Date:  2015

Review 3.  The state of the science of health and wellness for adults with intellectual and developmental disabilities.

Authors:  Lynda Lahti Anderson; Kathy Humphries; Suzanne McDermott; Beth Marks; Jasmina Sisirak; Jasmina Sisarak; Sheryl Larson
Journal:  Intellect Dev Disabil       Date:  2013-10

Review 4.  Intellectual disability rights and inclusive citizenship in South Africa: What can a scoping review tell us?

Authors:  Charlotte Capri; Lameze Abrahams; Judith McKenzie; Ockert Coetzee; Siyabulela Mkabile; Manuel Saptouw; Andrew Hooper; Peter Smith; Colleen Adnams; Leslie Swartz
Journal:  Afr J Disabil       Date:  2018-04-25

5.  Developing human rights based indicators to support country monitoring of rehabilitation services and programmes for people with disabilities: a study protocol.

Authors:  Dimitrios Skempes; Jerome Bickenbach
Journal:  BMC Int Health Hum Rights       Date:  2015-09-24
  5 in total

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