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


METHODS
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.
Institute on Disability and Human Development, Department on Disability and Human Development (M/C 626), University of Illinois at Chicago, 1640 W. Roosevelt Road, Chicago, IL 60608, USA. gfujiura@uic.edu
Glenn T
GT
Fujiura
Violet
V
Rutkowski-Kmitta
Randall
R
Owen
D019352:Censuses; D003625:Data Collection / Q000592:standards*; D005069:Evaluation Studies as Topic; D006291:Health Policy; D006304:Health Status; D006801:Humans; D008607:Intellectual Disability / Q000145:classification / Q000453:epidemiology*; D038622:Internationality; D019989:Persons with Intellectual Disabilities; D011159:Population Surveillance