1. Building a disability database to monitor the implementation of UNCRPD in your country Adele D. Furrie Council of Canadians with Disabilities CANADA adfurrie@rogers.com June 10, 2015

2. FROM YESTERDAY TO TOMORROW 1981 International Year of Disabled Persons and the 1983 – 1992 International Decade of the Disabled led to …….. United Nations activities directed to data – UN Disability Statistics Database (DISTAT) – International workshops on disability statistics – Guidelines and Principles for the Development of Disability Statistics World Health Organization (WHO) – International Classification of Functioning The Washington Group on Disability Statistics The WHO Modal Disability Survey DESA/Australia Initiative 2

3. BUILDING YOUR DISABILITY DATABASE QUESTIONS YOU NEED TO ASK BEFORE YOU START 1.WHAT are your country’s priorities? 2.WHAT does “disability” mean in your country? 3.WHAT data do you need? 4.WHAT data exist now? 5.HOW much money is available? 6.WHAT vehicles are available to get the missing data? 3

4. DETERMINING YOUR COUNTRY’S PRIORITIES? What are the short-term priorities? What are the longer-term priorities? How do these align with the global indicators? 4

5. What are your country’s priorities? ObjectivePopulationData needed Who requested the data Priority 5

6. WHAT DOES “DISABILITY” MEAN IN YOUR COUNTRY? CRPD (Article 1) ‘…. those who have long-term physical, mental, intellectual, or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others’. 6

7. The Washington Group – Short set of questions Do you have difficulty seeing, even if wearing glasses? Do you have difficulty hearing, even if using a hearing aid? Do you have difficulty walking or climbing steps? Do you have difficulty remembering or concentrating? Do you have difficulty (with self-care such as) washing all over or dressing? Using your usual (customary) language, do you have difficulty communicating, (for example understanding or being understood by others)? 7 WHAT DOES “ DISABILITY” MEAN IN YOUR COUNTRY?

8. Canada – Short set of questions Does this person have any: 1.difficulty seeing (even when wearing glasses or contact lenses)? 2.difficulty hearing (even when using a hearing aid)? 3.difficulty walking, using stairs, using his/her hands or fingers or doing other physical activities? 4.difficulty learning, remembering or concentrating? 5.emotional, psychological or mental health conditions (e.g., anxiety, depression, bipolar disorder, substance abuse, anorexia, etc.)? 6.other health problem or long-term condition that has lasted or is expected to last for six months or more? 8 WHAT DOES “ DISABILITY” MEAN IN YOUR COUNTRY?

9. WHO MODEL DISABILITY SURVEY General population survey Three modules to identify population with disabilities – Functioning – Health conditions and capacity – Environmental factors For more information – contact: Dr. Alarcos Cieza ciezaa@who.net 9

10. WHAT DATA EXIST NOW? 10 Administrative Data Social Surveys Census of Population Gap Analysis – Identified data needs versus data available from existing sources Civil Register

11. DO YOU NEED TO COLLECT NEW DATA? You have: Your priority grid Your gap analysis Your overall budget You need to: Assess your data collection options to collect missing data Develop detailed budget for each option 11

12. WHAT ARE YOUR DATA COLLECTION OPTIONS? – PROS AND CONS The Census An existing social survey A general population survey (WHO) A disability-specific survey (Canadian model) 12

13. ….. And so your journey begins!! THANK YOU! 13