Guatemala National Disability Survey (ENDIS)

Renata, a young girl with cerebral palsy and hearing problems, learns sign language with her teacher at Fundal School in Guatemala City.

CBM together with the CONADI (National Disability Council of Guatemala), UNICEF and the International Centre for Evidence in Disability conducted a national disability survey in Guatemala. The survey was the most comprehensive of its kind ever undertaken in Latin America.

The Guatemala National Disability Survey (ENDIS) was undertaken to gain disability disaggregated population data and understanding of the lived situation for people with disabilities in order to inform and motivate evidence-based advocacy, policy and service planning.

The study had three components:

  • A population based survey to estimate the prevalence of disabilities.
  • A case-control study to compare people with and without disabilities in terms of their socio-economic situation and their use of education, health, water and sanitation, and employment services.
  • A qualitative component to explore the conceptual, cultural and social interpretation and responses to disability.

Key findings

1. Prevalence of disability  

  • The overall prevalence of disability was 10.2 %.
  • Overall, 31% of the households included in the survey included at least one household member with a disability.
  • Prevalence increased with age (children (<18 years): 5.3%, adults 18-49 years: 9.9% and adults 50+ years 24.1%).
  • Among adults the prevalence of disability was higher for women compared to men.
  • By functional domain, the prevalence of significant limitations among adults was highest in the domains of anxiety/depression (9.3%) mobility (8.0%), seeing (4.2%) and hearing (4.0%). Amongst children the domains with highest reported significant limitations were anxiety (1.9%), mobility (1.0%), and maintaining relationships (1.0%).
  • Comparing people with and without disabilities, people with disabilities were more likely to be in the poorest socio-economic group, had lower access to education and were less likely to have ever married or lived with a partner.

2. Welfare of people with disabilities compared to people without disabilities

  • In rural areas children with disabilities (61%) were less likely to be attending school compared to children without disabilities (82%). In urban areas school attendance was over 80% for both children with and without disabilities. Girls with disabilities were significantly less likely to be attending school than girls without disabilities.
  • Adults with disabilities were significantly less likely to have worked in the previous week compared to adults without disabilities and had less stable livelihoods (i.e. more likely to work only once in a while compared to throughout the year).
  • People with disabilities had higher reported participation restrictions, experienced greater environmental barriers, and had poorer self-rated quality of life compared to people without disabilities.
  • People with disabilities were more likely to have reported a serious health problem in the past 12 months and were more likely to have been diagnosed with high blood pressure.
  • Women of reproductive age (15-49 years) with disabilities were less likely to have sought antenatal care in their last pregnancy (within the past 5 years), but were more likely to have delivered their baby in a health centre or hospital (rather than at home) and have the birth assisted by a doctor.
  • Reported vaccination coverage was high for both children with and without disabilities.

3. Welfare among people with disabilities

  • Child school attendance was lowest in rural areas and among girls.
  • Poorer quality of life was associated with lower socio-economic status and living in a rural area.
  • Adults with no formal education were less likely to work.
  • Children with physical or cognitive limitations had the lowest access to school and adults with physical or cognitive limitations were the least likely to work, and reported the lowest participation and quality of life scores.

4. Qualitative study

  • Findings highlight a scenario of deep conceptual complexity, marking out disability as a notion and experience that is fluid, heterogeneous and dynamic.
  • In the absence of safety nets and assets, families and poor communities, for better or for worse, are the only source of survival for disabled people.
  • Whole families are cast into the most extreme and chronic poverty positioning these as the poorest of the poor- ‘disabled families’. This situation is created and perpetuated by deep structural inequalities and a policy and service landscape marked by disinterest in the plight of the poor, profound gaps and barriers.

  • Taking into consideration that 10.2% of the national population, and 31% of all households in Guatemala, include at least one person with a disability, and given the multiple associations between disability and disadvantage identified by ENDIS 2016, inclusion of persons with disabilities is an urgent priority for all public policies and programming.
  • Deprivation, no access to safety nets, constrained livelihoods, infrastructural barriers, profound isolation, lower quality of life and low assets are common realities that entrap persons with disabilities, particularly in rural areas. The provision of safety nets and active inclusion of people with disabilities and their families in existing social programs is imperative.
  • In line with international recommendations, to document change over time and to compare findings with other countries in the region, repeated National Disability Surveys should be implemented in approximately five years’ time.
  • Stakeholders must recognise the differing needs amongst people with disabilities and ensure effective mechanisms to support these. For example, children with disabilities require support in accessing education, older people with disabilities need rehabilitation and other support, and women with disabilities face multiple additional disadvantages.
  • Further research on the epidemiology of mental health issues in the Guatemalan population, and assessment of the mental health system is urgently needed to create an evidence-based framework for mental health within the Guatemalan public health system. A special focus is needed on addressing the gender disparity in the prevalence of anxiety and depression, and in the promotion and resourcing of community mental health programmes.
  • A new, evidence-based inclusion plan for patients with disabilities should be created and enacted by the Guatemalan public health system. This plan should address the realization of the rights of people with disabilities at all levels of the public health system, the financing of their healthcare, the provision of assistive devices and support services, and the mitigation of catastrophic medical expenses that they and their families might incur. Moreover, effort is needed in better training of healthcare staff to ensure that people with disabilities seeking healthcare are treated with respect and dignity.
  • Livelihoods of people with disabilities should be developed through both governmental and private sector initiatives. A special focus is needed on addressing the urban-rural disparities identified in this study, and on creation of entrepreneurship and training programmes to support people with disabilities in finding work. In addition, the additional disadvantages faced by women with disabilities (lower access to work compared to men with and without disabilities) should be addressed by active positive discrimination and affirmative action to support their access to livelihoods.
  • The education of children with disabilities should be prioritised through the public education system, particularly in rural areas. A special focus is needed on addressing the gender, disability-type, and urban/rural disparities in education identified in this study, and to promoting the relevant legislation to overturn this.
  • The abandonment of children with disabilities by their fathers must be combatted through social interventions and programs. Those children who have been abandoned by their father must be given social support, for example via the Ministry of Wellbeing.
  • Public awareness of the rehabilitation and health services available in Guatemala should be improved, through the dissemination and utilization of the National Directory of Disability Services via the Guatemalan public health system, targeted awareness-raising to segments of the population in which disparities are highest, and decentralization of rehabilitation from specialty centres to community based rehabilitation. In particular, the approach, ‘Modelo Incluyente de Salud’ (MIS) promoted by the Ministry of Health, is an excellent opportunity to strengthen community based approached to rehabilitation, mental health, promotion and prevention.
  • Stakeholders must work together to acquire additional funds to fully realise the National Action Plan on realising the Convention on the Rights of Persons with Disabilities (CRPD) already established by CONADI, and to ensure adequate budgeting for inclusion across all government and non-government programmes. The results of this study (both quantitative and qualitative) should be incorporated, along with links to the Sustainable Development Agenda, the WHO Global Disability Action Plan, the WHO GATES project, the Education for All Salamanca Statement and the recommendations of the UNCRPD committee on the implementation of the CRPD in Guatemala.
  • The public should be educated to understand their rights and facilitated via Disabled People’s Organisations to monitor and challenge public and private actions from the local, municipal and regional levels through departmental and municipal commissions.
  • The National Statistical Office (INE), in all their surveys, should include questions on disability based on Washington Group questions.

Guatemala National Disability Study

  1. Full report (pdf | 10 MB)
  2. Summary report (pdf | 2 MB)

Disability and Poverty in Rural Guatemala. Qualitative report

  1. English version (pdf | 356 KB)
  2. Spanish version (pdf | 362 KB)

Please contact us for the accessible versions of the survey at contact(at)cbm(dot)org