Alternative Ways of Collecting Data by Engaging Organizations of Persons with Disabilities towards

Implementing the SDGs and the UN Convention on the Rights of Persons with Disabilities

Professor Nora GroceLeonard Cheshire Disability and Inclusive Development Centre

Department of Epidemiology & Public HealthUniversity College London

www.ucl.ac.uk/leonard-Cheshire-research

Engaging with People with Disabilities/ DPO

Leonard Cheshire Disability is a NGO working in 54 countries for over 60 years – in addition to being a major provider of services and advocacy in UK

Leonard Cheshire Disability and Inclusive Development Centre, University College London, founded in 1996 – is a collaboration between LCD and UCL, specifically tasked with generating APPLIED research for use in international disability and development efforts

Over past decade we have undertaken disability related research in 23 countries as well as working with DPOs, sister NGOs, academic instituions and UN organizations (i.e. UN DESA/ UNICEF/ WHO/ ILO/ UNDP – currently have MOUs with World Bank/UNESCO)

Almost all our research is done in conjunction/ collaboration with DPOs as well as a variety of in-country NGOs, research centers (both academic and community based) as well as Leonard Cheshire Global Alliance affiliated regional and country offices

Consistently find that working with DPOs and people with disabilities we get:

More information/ more accurate information/ and new insights into disability issues. Almost always, these findings have significant implications for policy and programs (including SDG related work).

Kenya: University of Nairobi, School of Public Health, African Centre for Science and Technology; United Disabled Persons KenyaUganda: Makerere University, Department of Social Work and Social Administration; National Union of Disabled Persons of Uganda Zambia: Institute of Economic and Social Research, University of Zambia; Zambia Agency for Persons with DisabilitiesSierra Leone: University of Sierra Leone, Department of Sociology and Social Work; Sierra Leone Union of People with DisabilitiesSouth Africa: Stellenbosch University

International Experts: Dr D, Mont; Professors T. Shakespeare, S. Mitra, M. Schneider, L. Swartz

BACKGROUNDBRIDGING THE GAP: EXAMINING DISABILITY AND DEVELOPMENT IN FOUR AFRICAN COUNTRIES

> ESRC/DFID FUNDED POVERTY ALLEVIATION GRANT> MIXED METHODS (POLICY REVIEW/ SECONDARY DATA ANALYSIS/ SURVEY/ FOCUS GROUP) >ACCESS TO HEALTH/ EDUCATION/ EMPLOYMENT & SOCIAL PROTECTION IN FOUR COUNTRIES

LCD > 4 AFRICAN DPOS > 5 AFRICAN UNIVERSITIES - LINKING DPOS AND ACADEMIC IN-COUNTRY PARTNERS

Research Toolkit for Disabled Peoples Organisations

www.ucl.ac.uk/leonard-Cheshire-research

Bringing DPOs and organizations working on disability issues in as partners works best when they are provided information and training – building skills/expertise they can use in future

Toolkit for example

Collection of data by organisations themselves

Collaboration with Government (NSOs) – national/regional/local

Collaboration with NGOs: Development/health/educational

Collaboration with researchers

Quantitative Data, Qualitative Data and the Benefits of Mixed Methods

Quantitative: Working with disability groups at all levels: (conceptual/ wording of tools/ engaging with disabled people and households) allows collection of better disability data.

Qualitative: Important insights that would otherwise be missed. (By the way, when done well, qualitative should be as rigorous as quantitative)

We have found consistently that MIXED Methods work particularly well – Quantitative can tell you HOW MANY Qualitative can tell you

Why Identify Issues/ Patterns Previously not identified Identify gaps in implementation/ policy/ programming Help Generate New Questions

Cross-sectional study was conducted in 5 districts of Sierra Leone, randomly selecting 17 clusters for a total sample of 425 households; with control group of non-disabled adults

Particular attention to access to reproductive health care services and maternal health care for disabled women in urban and peri-urban

Quantitative: Found disabled women had same numbers of children as non-disabled peers and were as likely as non-disabled in desiring another child:

Qualitative: Disabled women were as likely to be interested in having access to contraception as their non-disabled peers

Conclusion: Disabled women are not only sexually active, but also need better access to reproductive health services.

Trani F, Brown J,, K, Bahc O, Morlaic T, Bailey N, Groce N. Access to health care, reproductive health and disability: A large scale survey in Sierra Leone. Social Science & Medicine. 2011:73:10:1477–1489

For example: Access to Maternal Child Health Services in Sierra Leone

Access to Water and Sanitation: Rural Uganda & Zambia Head of Household verses Disabled Member Reporting

Frequency of Bathing – Access to Water for Bathing

Head of Household

Disabled Memberof Household

Daily 87% 67%

Every other day

10% 8%

2 times per week

3% 3%

1 time per week

1% 6%

Access drinking Water in House

Head of Household

DisabledMember of Household

Daily Use

83% 36%

Partners:

LCD/ WaterAid/Loughborough U.

ACT (Appropriate Technology - Uganda

INESOR – U of Zambia

Disabled Street Beggar Project: EthiopiaGroce N., Murray B, Loeb M, Tramontano C, Trani JF. Mekonnen A. 2013. Disabled Street Beggars In Ethiopia: Findings from the UCL/ ILO Pilot Study. Employment Working Paper 141. Geneva: International Labour Organization, United Nations. 2013; Summary of Findings, 2014.

Quantitative gives weight to qualitative findings

Working with ILO/ LCD-Ethiopia

Mixed Methods Using Survey/Focus Groups/ Interviews

Total: 350 people with disabilities

Life course – what brings people to streets - what keeps them on streets- what are their lives life- what do they see as their future

* Working with people with disabilities were able to identified unanticipated complexity - Disabled early in life – sent to beg - Disabled early in life – sent to school/ beg - Disabled once in urban area -felt they had no options

Result: Identification of Significant points of intervention

Conclusion

Leonard Cheshire Disability has consistently found working with persons with disabilities/ Disabled Peoples Organizations

> Significantly increased amount of quality statistical data New insights into relevance of statistical data New information/ insights through qualitative data

IMPORTANTLY: Findings often have significant implications for

Policy Practice Resource allocation Human Rights (Equity/ Equality) SDGs

http://www.ucl.ac.uk/leonard-cheshire-research