Evidence on Disability and Social Protection Matthew Walsham International Centre for Evidence in Disability Discussion Forum on Disability and Social Protection London, March 26 th 2015

Literature Review Very limited and poor quality

Global Policy Framework Strong rights-based framework for full inclusion of people with disabilities into social protection systems:  Universal Declaration of Human Rights: Article 25 (adequate standards of living and security)  United Nations Convention on the Rights of Persons with Disability: Article 28 (adequate standards of living and social protection) Not among initial priorities of institutions created out of UNCRPD, but some recent initiatives in this area Both disability and social protection are increasingly visible in major global policy discussions e.g. in talks on ‘post-2015‘ agenda

Dedicated section on social protection in the WHO Community-Based Rehabilitation guidelines Universal Health Coverage and social protection closely related: 1) population coverage 2) benefit package 3) prepayment/pooling of funds Disability rarely featured in discussions on Universal Health Coverage and social health protection Social Health Protection

Overview of the study To scientifically analyse in applied research how social protection systems are and should be designed to adequately and systematically include persons with disabilities. Commissioned by GIZ on behalf of BMZ (German Federal Ministry for Economic Cooperation and Development) Led by LSHTM with technical input from Technische Universität München (TUM) and Steering Committee of experts in Europe Local research partners: Tanzania: REPOA with input from CCBRT and SHIVYAWATA Peru: Sociedad y Discapacidad (SODIS) and Centre of Excellence in Chronic Diseases (CRONICAS)

Methodology: Overview Policy analysis (country level): Literature review Semi-structured interviews with key informants Quantitative survey (district level): Survey to establish prevalence of disability In-depth case-control study Qualitative interviews (district level): Interviews with all cases Interviews with local authority and programme staff

Methodology: Quantitative Survey Screening phase: Random sampling of households. Complete census of household members looking for people with disabilities Participants ≥ 5 assessed for disability using the Washington Group Short Set of Questions Limitations were reported by a third person (head of household) Case-control study: Enrolling PWD found in the screening phase and matching them by sex and age (±3 years) Planned to enroll 135 cases and 135 controls to detect a OR of 2.1 or greater with a power of 80% and an exposure prevalence of 25% among controls Questionnaire focused on demographics, access to health, education and employment as well as access to social protection programmes

Findings - Peru

Quantitative Survey: Morropón District Of 3,684 participants in 1,084 households, a total of 290 individuals had a disability (7.9% of people in 21.6% of households) Prevalence of disability greater among older people, those with lower familial income and those in lowest socioeconomic tertile People with disabilities more likely to be single (23.4% v. 9.9%) and less likely to have children (36.8% v. 88.9% among women aged 15<49) Less inclusion in education and lower rates of literacy among people with disabilities People with disabilities less likely to have worked in last 7 days or year and had lower incomes (87.0% v. 54.4% earned <400 PEN)

Quantitative Survey Serious health problems in the last twelve months were more frequent among cases then controls (67.4% v. 33.3%) No overall difference in health seeking behaviour, but people with disabilities more likely to use health centres than pharmacies people with disabilities also reported limited access to and use of specialised services and assistive devices, with costs the main reported barrier No significant difference in enrolment in social protection programmes between people with disabilities and general population despite higher needs Exception is higher rates of enrolment among households with a child with a disability in JUNTOS (85.7% v. 55.6%)

Findings - Tanzania

TASAF and CHF Tanzania Social Action Fund (TASAF): Introduced conditional cash transfer alongside public works and income generation activities in 2009, now scaling-up Disability questions are included in targeting questionnaire and are a weighted component of the verification criteria According to TASAF, data on inclusion of PWD is collected through the questionnaire but has never been analyzed Community Health Funds (CHF): No specific consideration given to disability at national level Criteria for exempting and enrolling those unable to afford membership are supposed to be decided at District level Some innovative approaches to enrolment of vulnerable older people through District contributions are being supported by iNGOs

Quantitative Survey: Lindi, Mbeya and Tanga Districts Of 4,475 participants in 1,170 households a total of 140 people had a disability (3.2% of people in 13.3% of households) Prevalence of disability greater among older people and people with disabilities less likely to be married and less likely to have children Households with people with disabilities had a higher dependency ratio, higher poverty score and more likely to be in the lowest poverty quartile People with disabilities had lower rates of literacy and were less likely to have ever attended school People with disabilities were more likely to have had a serious illness (41% v. 20%) and paid more for treatment (26,093 TZS v. 13,267 TZS) Very low knowledge of and access to specialised services and assistive devices among people with disabilities (e.g. only 41% aware of assistive devices and of those only 47% of those who needed them were using them)

Quantitative Survey No significant difference in enrolment in social protection programmes except for TASAF, but very low number (6% = 6 individuals v. 1% = 7 individuals) Very low overall enrolment rates among people with disabilities and general population (21% v. 17% in any programme) People with disabilities had lower rates of enrolment in CHF (9% v. 112%) and health insurance in general (10% v. 19%) so rates certainly not higher than general population despite greater need Separate survey of CHF members (181 households with 805 individuals) found richer households(higher poverty scores) and lower rates of disability (2.4% v. 3.2%) than general population, but not statistically significant

Conclusions Both surveys showed significant gaps between people with disabilities and general population in key areas (health, literacy, poverty etc.) Neither country has designed social protection programmes to be inclusive of people with disabilities – inclusion of children within JUNTOS not the result of programme design – but the research has already led to changes in Peru Additional barriers and costs incurred by people with disabilities are not being addressed Potential for social protection programmes to play a key role in improving access to essential services for people with disabilities e.g. both mainstream and specialised health and rehabilitation services

Conclusions Research demonstrated that mixed-methods approach is feasible and effective More evidence is needed on what works in terms of inclusive social protection through: Evaluating existing programmes that are designed to be inclusive Designing, testing and documenting innovative interventions This will contribute to developing robust, evidence-based guidance and tools for use in programme design and implementation Evidence is particularly weak on social health protection / Universal Health Coverage