Can we have development without disadvantage?

1. Can we have development without disadvantage? Living conditions of disabled people in developing countries Tom Shakespeare

3. Overview • Introduction • Absolute disadvantage • Relative disadvantage • Health • Employment • Poverty • Development gap • Barriers • Ways of bridging the gap

4. Background • Developing world: plenty of anecdotal and observational evidence - and emerging scientific evidence - that disabled people encounter multiple disadvantages (WHO 2011, Groce et al 2011; Mont & Nguyen, 2013).  • Strong correlation between disability and poverty: mutually reinforcing – but lack of good evidence (Groce et al 2011) – although Banks and Polack found 80% of studies support link • Evidence gap: lack of data, problem with definitions • Ratification of CRPD, but lack of domestic human rights legislation (Lang and Muranguria, 2009). • Lack of meaningful, strategic inclusion of disabled people in poverty alleviation initiatives and mainstream public services (Groce et al 2011; Armstrong et al, 2011; Tomlinson et al, 2009; Palmer, 2012) – e.g. Uganda, NUDIPU mostly excluded from PRSP discussions

5. Absolute disadvantage • Poor countries: poor access to livelihood, health, education, employment for everyone • Disabled people seen as ‘poorest of the poor’: lack of access to health, education, employment, livelihood. • But Loeb et al (2008) found similar levels of income for households with and without person with disability • Availability of disability grants in some countries – e.g. South Africa (Gooding and Marriot 2009) • Concept of multi-dimensional poverty – more associated with disability than monetary poverty (Mitra et al 2011) • Disabled people are very heterogeneous

6. World Health Survey (reported in WHO 2011) • 15% of people experience significant disability (1 billion) • Disabled people 2x more likely to find healthcare provider skills or equipment inadequate to meet needs; • 3 x more likely to be denied care; • 4 x more likely to be treated badly than non-disabled people. • 50% more likely to experience catastrohic health expenditure

7. Relative disadvantage: health • Trani and Barbou-des-Courieres (2012) study in Afghanistan: did not show major socioeconomic related inequity in disability and healthcare utilization in Afghanistan, because there was generally extreme and pervasive poverty found in Afghanistan. • Access to immunisation, Ecuador: Nora Groce et al (2007) found similar rates among disabled and non-disabled. • Disabled women’s access to maternal health services, Nepal: Nora Groce et al found more similarities than differences among women with (18.7%) and without disabilities (n=3930). Women with disabilities slightly more likely to attend 4+ ANC visits and give birth in hospital

9. Trani et al (2011) study in Sierra Leone (n=2190) • 17% disability prevalence, 73% households had a disabled family member; • Comparable access to drinking water; • No significant differences in reporting use of contraception; • No significant differences between disabled and non-disabled women in accessing maternal health. Possible over-referral of disabled women to tertiary facilities; • 73% of respondents with severe disabilities responded they were in good health (compared to 89% of nondisabled); • 75% had been immunised (cp 88% nondisabled); • 80% satisfaction with health services (cp 94% nondisabled); • 70% said they could access a hospital when needed (85% nondis).

10. Relative disadvantage: employment

11. High income country employment ratio Source:http://appsso.eurostat.ec.europa.eu/nui/show.do Eurostat 2011 figures for age 15-64 work limiting disability

12. Self employment and development (Taken from La Porta and Shleifer 2014, 119)

13. “The development gap” • “Where the mass of the population are vulnerable to poverty, it may be that people with disabilities do not fare much worse than their neighbours… The implication is that as a country develops economically, the employment inequalities between disabled and non-disabled people are likely to increase.” (Shakespeare, 2012, 277) • Gaps in services, access to services • Exclusion from education leads to exclusion from employment • Governments do not have an accurate picture of the extent to which disabled people are included in such efforts due to a lack of nationally available, and reliable, data; lack of monitoring • Lack of policies specifically targeted to disabled adults and children • Policies are not effectively translated into practice at the national and local level; • Move towards, e.g. Universal Health Care, Universal Primary Completion: may increase inequalities, because disabled people left behind.

15. ‘Bridging the divide’ • ESRC/DFID funded research project in 4 Southern African countries: Kenya, Sierra Leone, Uganda, Zambia • Led by Professor Nora Groce, based at UCL, working with local universities and DPOs • 4 approaches to data collection: • Policy analysis • Secondary data analysis • Qualitative work • Includes success factors for high achievers • Pilot household survey

16. Barriers to inclusion • Accessibility and Attitudes • Transport (e.g. Coomer 2013, lack of transport was reported as a big problem in getting access to mental health care in Namibia), • Communication (Arulogun et al 2013, study of girls with hearing impairment in Nigeria, 95% had made at least one visit to health facility to discuss reproductive health issues; 36.7% embarrassed to ask questions in presence of interpreter: communication (40.5%) and cost (10.8%) key barriers to access. • Information (e.g. Fisher and Shang 2013, major information obstacles for families with disabled children in China, resulting in confusion, misdiagnosis, lack of awareness of therapies. • Cost (e.g. Arulogun et al 2013 found girls who were working were 20x more likely to get services; Fisher & Shang found 63% children with disabilities relied entirely on their family, no govt services) • Complexity: labyrinthine health services (e.g. Gibson and Mykitiuk, 2012),

17. Additional needs • Disabled people are very heterogeneous • For some, “level playing field” suffices (cf other minorities) • For others, additional investment/support is needed – e.g. rehabilitation, personal assistance, livelihoods. • Disabled people often encounter extra costs associated with impairments/illnesses • Disabled people can be limited in the amount or type of work they can do • Some people with disabilities are more likely to fall behind than others: mental health, intellectual disability • Justice demands treating like cases alike, and unalike cases unalike

19. Ways forward • Twin track strategy: make mainstream services inclusive, but pay attention to particular needs, vulnerabilities • Involvement of disabled people & DPOs in designing, monitoring services • Challenge the assumption that disabled people don’t matter • Equality, reasonable accommodation – and meeting extra needs • Differences matter: disabled people are not the same as everyone else, impairments make a difference • No excuse for not designing in disability from the start • Transport is vital: urban/rural differences • Sustainable Development Goals – monitoring of disabled people’s progress – needs disaggregated data • Economic growth but also attention to inequalities (e.g. Zambia, UK) • “Universal” and “All” and “Everyone” must mean what they say

20. Team time trial Tour de France – time clock only stops when final member of team of five crosses the line

21. References • Arulogun OS1, Titiloye MA, Afolabi NB, Oyewole OE, Nwaorgu OG. (2013) Experiences of girls with hearing impairment in accessing reproductive health care services in Ibadan, Nigeria. Afr J Reprod Health. 2013 Mar;17(1):85-93. • Coomer RA (2013) The experiences of parents of children with mental disability regarding access to mental health care, African Journal of Psychiatry 16: 271-276 • Cupples ME et al (2012) Improving healthcare access for people with visual impairment and blindness, BMJ 344, e542 • Dew A et al (2013) Addressing the barriers to accessing therapy services in rural and remote areas. Disability and Rehabilitation 35, 18: 1564-1570 • Fisher KR, Shang X (2013) Access to health and therapy services for families of children with disabilities in China, Disability and Rehabilitation 35 (25) 2157-2163 • Geere JL et al (2012) Caring for children with physical disability in Kenya: potential links between caregiving and carers’ physical health, Child: care, health and development, 39, 3: 381-392 • Gibson BE, Mykitiuk R (2012) Health care acces and support for disabled women in Canada: falling short of the UN Convention on the Rights of Persons with Disabilities: a qualitative study, Women’s Health Issues 22-1: e111-e118 • Groce N, Ayora P, Kaplan IC (2007) Immunization rates among disabled children in Ecuador: unanticipated findings. The Journal of Paediatrics, 151: 218-220 • Groce N, Kembhavi G, Wirz S, Lang R, Trani J-F, Kett M (2011) Poverty and Disability: a critical review of the literature in LMIC, UCL Working Paper 16 • Iezzoni LI, Killeen MB, O’Day BL (2006) Rural residents with disabilities confront substantial barriers in obtaining primary care, Health Services Research 41 (4 part 1): 1258-1275 • Lagu T et al (2013). Access to Subspecialty Care for Patients With Mobility Impairment: A Survey. Ann Intern Med.;158(6):441-446. doi:10.7326/0003-4819-158-6-201303190-00003 • La Porta R, Shliefer A (2014) Informality and development, Journal of Economic Perspectives, 28, 3: 109-126 • Loeb M, Eide AH, Jelsma J, Toni Mk, Maart S (2008) Poverty and disability in Eastern and Western Cape Provinces, South Africa, Disability and Society 23, 4: 311-321 • Meseguer-Santamaria M-L et al (2013) Satisfaction with healthcare services among Spanish people with disabilities, Disability and Health Journal 6: 18-25 • Nicholson L, Cooper S-A (2011) Access to healthcare services by people with intellectual disabilities: A rural-urban comparison, Journal of Intellectual Disabilities 15, 2: 115-130 • Pharr JR. (2013) Accommodations for patients with disabilities in primary care: a mixed methods study of practice administrators. Glob J Health Sci. Oct 8;6(1):23-32. doi: 10.5539/gjhs.v6n1p23. • Trani J-F et al (2011) Access to health care, reproductive health and disability: a large scale survey in Sierra Leone. Social Science and Medicine 73: 1477-1489 • Trani JF1, Barbou-des-Courieres C. (2012) Measuring equity in disability and healthcare utilization in Afghanistan. Med Confl Surviv.Jul-Sep;28(3):219-46. • WHO (2011) World Report on Disability, Geneva: WHO.