Can we have development without disadvantage?

Living conditions of disabled people in

developing countriesTom Shakespeare

April 19, 2023

Overview

• Introduction• Absolute disadvantage• Relative disadvantage

HealthEmploymentPoverty

• Development gap• Barriers• Ways of bridging the gap

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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

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Absolute disadvantage

Poor countries: poor access to livelihood, health, education, employment for everyoneDisabled 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 disabilityAvailability 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

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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

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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

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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).

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Relative disadvantage: employment

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Country Dis % Non dis % Ratio Reference

China 48.9 73 0.67 Buckup 2009

India 37.6 62.5 0.61 Mitra and Sambamoorthi 2006

Sierra Leone 56.1 60.4 0.93 Trani et al 2010

South Africa 46.96 48 0.98 Statistics South Africa 2006

Zambia 45.5 56.6 0.81 Eide and Loeb 2006

High income country employment ratio

Country Disabled Non-disabled Ratio

European Union (28)

38.1 67.7 0.56

Finland 50.6 74.8 0.68

Germany 35.8 72.4 0.49

Netherlands 39.4 80.4 0.49

Poland 26.2 63.9 0.41

UK 36 76 0.47

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Source: http://appsso.eurostat.ec.europa.eu/nui/show.doEurostat 2011 figures for age 15-64 work limiting disability

Self employment and development

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(Taken from La Porta and Shleifer 2014, 119)

“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.

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‘Bridging the divide’

ESRC/DFID funded research project in 4 Southern African countries: Kenya, Sierra Leone, Uganda, ZambiaLed 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

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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),

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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

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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

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Team time trialTour de France – time clock only stops when final member of team of five crosses the line

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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: 271-276Cupples ME et al (2012) Improving healthcare access for people with visual impairment and blindness, BMJ 344, e542Dew A et al (2013) Addressing the barriers to accessing therapy services in rural and remote areas. Disability and Rehabilitation 35, 18: 1564-1570Fisher KR, Shang X (2013) Access to health and therapy services for families of children with disabilities in China, Disability and Rehabilitation 35 (25) 2157-2163Geere 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: 381-392Gibson 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-e118Groce N, Ayora P, Kaplan IC (2007) Immunization rates among disabled children in Ecuador: unanticipated findings. The Journal of Paediatrics, 151: 218-220Groce 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 16Iezzoni 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): 1258-1275Lagu T et al (2013). Access to Subspecialty Care for Patients With Mobility Impairment: A Survey. Ann Intern Med.;158(6):441-446. doi:10.7326/0003-4819-158-6-201303190-00003La Porta R, Shliefer A (2014) Informality and development, Journal of Economic Perspectives, 28, 3: 109-126Loeb 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: 311-321Meseguer-Santamaria M-L et al (2013) Satisfaction with healthcare services among Spanish people with disabilities, Disability and Health Journal 6: 18-25Nicholson L, Cooper S-A (2011) Access to healthcare services by people with intellectual disabilities: A rural-urban comparison, Journal of Intellectual Disabilities 15, 2: 115-130Pharr 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: 1477-1489Trani 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.

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