To promote inclusive development that fully integrates disabled people and their families into the economic and social life of their communities, quality data relating to disability must be collected. These data can serve many purposes: motivating inclusive development, helping the design of effective programs, monitoring them, and conducting evaluations to document good practices that can be scaled up or adopted elsewhere. The rate of disability found in household surveys and censuses varies dramatically. This variation results from differing measures of disability, different data collection techniques, and different reactions to survey questions by respondents.
Historically very little reliable data have been collected as to the numbers of persons with disabilities, their accommodation needs, and/or the type and nature of barriers faced by persons with disabilities in enjoying their human rights.
Many avenues for collecting information about persons with disabilities (such as national censuses and surveys) have not been effectively utilized in the past.
The collection of data on persons with disabilities is often a sensitive issue because of the possible misuse of the information collected.
Disability-based discrimination and stigma sometimes inhibits the willingness of survey administrators and participants to ask or answer questions related to disability.
Different understandings, definitions and concepts of disability can hinder the collection of reliable data. As a consequence, the UN Washington City Group has adopted a functional approach in its set of 6 questions developed for use in national censuses. The core questions include the following:
Do you have difficulty seeing even if wearing glasses or are you blind?
Do you have difficulty hearing even if using hearing aid/s or are you deaf?
Do you have difficulty walking or climbing stairs?
Do you have difficulty remembering or concentrating?
Do you have difficulty (with self-care such as) washing all over or dressing?
Because of a physical, mental, or emotional health condition, do you have difficulty communicating (for example, understanding or being understood by others)?
The responses that go with these questions are: [No], [Some], [A lot], and [Unable]
The World Bank’s experience in data collection, combined with this methodology, may be of great assistance to client countries in collecting disability-related information.
How does the CRPD address the issue of statistics and data collection?
Article 31 is one of the articles that addresses implementation and monitoring measures of the CRPD. Although data can be collected for the purpose of monitoring implementation of the CRPD, Article 31 addresses the need to collect such information in support of implementation of the specific obligations in the CRPD.
Article 31 not only obligates States Parties to collect appropriate information, but requires them to collect and maintain this information in a particular manner. For example, the privacy of persons with disabilities must be maintained and sensitive data kept confidential, whilst the human rights and fundamental freedoms of persons with disabilities must be protected during collection and use of data
Article 31 makes States Parties responsible for the dissemination of statistics and ensuring that the information is accessible to persons with disabilities and others.
Article 31 – Statistics and data collection
States Parties undertake to collect appropriate information, including statistical and research data, to enable them to formulate and implement policies to give effect to the present Convention. The process of collecting and maintaining this information shall:
Comply with legally established safeguards, including legislation on data protection, to ensure confidentiality and respect for the privacy of persons with disabilities;
Comply with internationally accepted norms to protect human rights and fundamental freedoms and ethical principles in the collection and use of statistics.
The information collected in accordance with this article shall be disaggregated, as appropriate, and used to help assess the implementation of States Parties' obligations under the present Convention and to identify and address the barriers faced by persons with disabilities in exercising their rights.
States Parties shall assume responsibility for the dissemination of these statistics and ensure their accessibility to persons with disabilities and others.