The Nossal Institute of Global Health, University of Melbourne Rapid Assessment of Disability (RAD): An instrument to support disability inclusive development Dr Nathan Grills (MPH, MBBS, DPHIL, DPH) The Nossal Institute of Global Health, University of Melbourne (in partnership with Public Health Foundation of India, CBM India and Uttarakhand Cluster)

UNCRPD, Article 31 - Statistics and data collection: BACKGROUND UNCRPD, Article 31 - Statistics and data collection: “Parties undertake to collect appropriate information, including statistical and research data, to enable them to formulate and implement policies” Inadequate measures of access and the barriers preventing access Many developing countries under-report disability prevalence and the needs of people with disabilities Different definitions of disability and methods to measure disability. .......this is not about data but about those with disability

Prevalence of disability Sources: United Nations Demographic Yearbook System (Nov.2006) and United Nations Disability Statistics Database (DISTAT)

Introduction: Why data? What type of data is needed? high quality, internationally comparable Data on prevalence Disaggregated: “Information collected in accordance with this article shall be disaggregated” Article 31 UNCRPD Data on accessibility and barriers Why do we need data? If you can’t measure it, it doesn’t count (invisible) Planning and implementation, monitoring and evaluation of programs/inclusive policies Advocacy for support Wide variation in estimates

To use the RAD Household and Individual survey to measure: AIM & OBJECTIVES To use the RAD Household and Individual survey to measure: Prevalence of disability in Dehradun (Uttarakhand) district Individual perception of well‐being, and Accessibility to services Barriers to participation in their communities  and so inform policy, raise awareness, and promote mainstreaming

Study population Dehradun District, in Uttarakhand, INDIA Sample size: Dehradun district: 2,441 adults 50 clusters (villages) of around 50 people

Methods: Sampling Cross-sectional population-based household survey using a two-stage cluster random sampling. 1st stage sampling: clusters randomly selected from the sampling frame using probability of selection proportional to cluster size. 2nd stage: selecting households within clusters through compact segment sampling. Each cases (disability) matched with control (matched age, sex) from the immediate neighbour

Rapid Assessment of Disability survey tool Component of RAD Expected Out come variables Household questionnaire Socio economic status and wealth index Individual questionnaire Adult demographics Self-assessment of functioning Activity limitation Kessler’s scale Psychological Distress Adult well being Adult well being scores for the people with disability and people with out disability Access to community Access to health, rehabilitation, Assistive devices, sanitation, Welfare services etc..among people with disability

Self-assessment of functioning 16 items related to 8 domains: vision, hearing, communication, mobility, fine motor skills, cognition, appearance and mental health. In the last 6 months, have you had difficulties seeing, even if wearing glasses? Yes/no How often? Some of the time Most of the time All of the time Participants responding difficulty most or all of the time to any one item of the first 7 domains and/or 2 items on mental health are considered to have a disability.

Community access domains Health Family decision making Assistive devices Rehabilitation services Water and sanitation Social activities Religion Government and social welfare DPOs Education Disaster management

RESULTS

Prevalence of Disability RAD study prevalence in Uttarakhand: Functional limitation 6.92% Mental health 4.3% Indian Census: Prevalence – 1.84% in Uttarakhand Mental health - <0.1% in Uttarakhand World Bank 2007: 6-8% World health survey: 24.9%!

Prevalence (%) Sample n=2411 RESULTS: Adjusted association between socio-demographic factors and disability   Categories Prevalence (%) Sample n=2411 Unadjusted OR (95%CI) Adjusted OR (95%CI) Overall All data  6.8 % (5.8-7.8) Age 18-24 years 3.7 (3.6-3.8) 1(Ref) 25-34 years 5.5(5.4-5.6) 1.5(0.8-2.9) 3.3(1.1-10.1) 35-44 years 4.8(4,7-4.9) 1.3(0.7-2.5) 2.0(0.3-6.6) 45-54 years 5.8(4.7-4.9) 1.6(0.8-3.2) 3.3(0.7-9.3) ≥ 55 years 13.7(13.5-13.9) 4.2(2.3-7.5) 3.8(1.0-14.1) Gender Female 6.3(6.2-.6.4) Male 8.1(8.0-8.2) 1.3(0.94-1.8) 1.5(1.1-2.2) Schooling Yes 4.9(4.8-5.0) 1   1 No 15.6(15.4-15.8) 3.2(2.3-4.4) 2.3 (1.5-3.4) Marital status Married 5.7(5.6-5.8) 1 (Ref) Single 6.5(6.4-6.6) 1.1(0.7-1.7) 2.3 (1.2-4.4) Separate/widowed/ divorced 19.3(13.6-26.2) 3.9(2.5-6.02) 2.5(1.5-4.1) Occupation Employed 5.4(5.3-5.5) Homemaker 1.2(.8-1.6) 1.1(0.6-1.9) None 14.8(14.6-15.0) 3.1(2.0-4.6) 2.7(1.6-4.5) Socioeconomic status Rich 2.8(1.5-4.8) Middle 6.1(4.7-7.8) 2,2(1.2-4.1) 2.6(1.4-5.9) Poor 9.2(7.4-11.2) 3.5(1.9-6.3) 4.5(2.1-9.4)

Unmet need in those with disability versus those without disability   Domain  Need (In the last 6 months, to what extent have you accessed...?) Case (disabilit y) %  Control (No disability % P – value Work UNMET NEED 35.2 9.9  <0.0001 Have not wanted to work for a living 26.0  29.8 Health Services 29.7 6.4 Have not needed health services access 16.4  33.3 Community Consultations 28.4 12.1 Have not wanted to participate 43.6 31.2 Rehabilitation Services 17.0 4.3 Have not needed to access rehabilitation 78.8  88.7

Summary of barriers from the combined domains of access TOTAL of all barriers reported Average % P- value Lack of information 61.1 17.3 <0.0001 Difficulty getting to services from home, transport 48.0 8.5 0.001 Physical inaccessibility 47.7 3.6 Absence of reasonable accommodation 43.8 11.4 Cost 32.0 7.8 0.005 Absence of personal assistance to visit 31.7 8.8 0.015 Not available 24.5 7.2 0.008 Negative attitudes 24.2 4.2 0.028 Family did not want me to access 9.5 6.2 0.188

Difficulty in getting to the service? Physical inaccessibility of the service? Difficulty in getting information Inaccessible of information: can’t get to it can’t hear it, can’t see it, can’t ask about it, can’t understand it

The barriers for the domains with highest level of most unmet needs Disability (Case) % No disability (Control) % P- value Place of work   Absence of reasonable accommodation 15.8 3.6 <0.0001 Physical accessibility of workplace 15.2 0.7 Difficulty getting to work from home 2.1 Lack of information about work 10.3 0.023 Negative attitudes towards you at work 7.9 1.4 0.009 Health services Lack of information about health services 14.6 4.3 0.003 Physical accessibility of health centre 12.1 11.5 0.021 Cost of health care (e.g. doctor’s fees, meds) 10.9 0.001 Difficulty getting to health centre from home 0.002 Community Consultation Lack of information about consultations 7.8 0.212 Difficulty getting to community meetings 0.045 6.7 0.359 Negative attitudes towards you at consultations Physical accessibility of community meeting 5.5 0.02

RAD Advantages and Limitations RAD Tool Survey Advantages Estimate number of people with disability in a community using ‘functioning’ as a measure Identify participation and inclusion in the community Identify barriers related to participation restrictions Compare with those without disability (case control) RAD Tool Survey Limitations: Not so rapid. Paper based. Data quality. Provides a snapshot only..... NOT details on Diagnosis of conditions (self report) Causes of disability and factors leading to barriers to participation

Conclusions Disability prevalence of 6.7% is a truer estimate than the census estimate of <2%. Disability prevalence is higher in older, non-married, poor, uneducated and home labourers Unmet need in participation greatest in work, health services, community consultations & rehabilitation . The main barriers to participation: Lack of information, lack of transport, physical inaccessibility, absence of accommodation Family attitudes and family support not barrier The RAD tool could be used across India to provide useful data to inform project planning and policy

“Bahut Dhanyavaad” ! The Public Health Foundation of India - SACDIR Dr GVS Murthy (Co PI) Funding partners Australian Aid Uni of Melbourne CBM India – major partner -- Dr Sara Varghese, Ms Fairlene Soji, CHGN Uttarakhand Cluster Coordinator - Lawrence Singh Field managers