What are the core principles that should be considered in the development of policies and programmes related to persons with disabilities in LMICs?

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Question & problem

Globally, over a billion people live with a disability. Nearly 80% live in low- and middle-income countries (LMICs). Disability is associated with lower educational attainment, lower employment rates, and limited access to health services. The United Nations’ Convention on the Rights of Persons with Disabilities (UNCRPD) is a landmark global treaty, that came into force in May 2008, to realise the rights of persons with disabilities. The UNCRPD brought a paradigm shift in recognising the need to address barriers affecting persons with disabilities across all spheres of life. The purpose of the Convention, as stated in Article 1, is “to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.” However, despite development in some areas, persons with disabilities continue to experience numerous barriers to their full inclusion and participation, especially in LMICs. In this brief, we reflect on literature reviewed across the Disability Evidence Portal to summarise the core principles that need to be considered in the formulation and implementation of policies and programmes that promote inclusion of persons with disabilities in LMICs.

Quote

“If people with disabilities remain invisible in data, they remain unaccounted for.”
- Abu Al Ghaib 2019

Recommendations

Enhance disability inclusion by reducing or eliminating the barriers and/or providing additional required measures to facilitate participation and inclusion.

Key recommendation

Enhance disability inclusion by reducing or eliminating the barriers and/or providing additional required measures to facilitate participation and inclusion.

Action

  • Develop and implement policies and strategies to eliminate the obstacles and barriers to accessibility, in areas related to transportation, health care, education, the justice system and information and communication technology, as well as in recreational and cultural activities and sports. At the same time, working to improve awareness and reducing attitudinal barriers in staff.
  • Apply the principles of universal design and international standards to eliminate barriers to both physical and virtual environment.
  • De-centralise services, for example procedures such as application process for disability-related programmes can take place locally within the community or in partnership with a public service facility such as post office.
  • Programmes must ensure that all activities being conducted with people with disabilities are accessible according to their needs e.g., meeting times and invitations sent well ahead so that necessary accommodations can be made; seminar rooms and halls have wheelchair access; close to transport links; sign language interpreters or guides are recruited; material and documentation is printed in large print or Braille and easy read summaries are available. These considerations should be reviewed by an advisory group of people with disabilities and be revisited and revised continually to reflect any changing or additional needs identified.
  • Global disability and development organisation such as the Light for the World recommend that disability inclusive projects should allocate about 2%-7% of the total budget to meet the extra cost associated with accessibility e.g. WASH facilities, reasonable accommodation needs. This budget allocation includes both administrative and operational costs.
Align national policies and programmes on disability with the UNCRPD framework.

Key recommendation

Align national policies and programmes on disability with the UNCRPD framework

Action

  • Strengthen national policies and programmes by ensuring they adequately address the CRPD principles. Existing laws and policies should be evidence-based and CRPD compliant.
  • Ensure the non-tokenistic participation of persons with disabilities as well as involving all stakeholders, including organisations of persons with disabilities as part of national policy and programme planning, and decision-making processes.
  •  Prohibit discriminatory practices on the basis of disability.
Take a collaborative approach to realising the rights of persons with disabilities, and invest in capacity development to achieve the Sustainable Development Agenda of ‘Leave no one behind.’

Key recommendation

Take a collaborative approach including persons with disabilities, and invest in capacity development to realise the goals of ‘Leave no one behind.’

Action

  • A wide range of stakeholders including policy makers, persons with disabilities, civil society organisations and local communities should collaborate in a democratic way at all stages of the process including identifying the problem, formulating the policy and/or programme to solve the problem, followed by its implementation, monitoring, and evaluation.
  •  Decision-making process should be driven by the  voices of persons with disabilities and OPDs at each stage.
  • Offer sensitisation programmes to all relevant stakeholders such as policymakers, members of civil society organisations, and service providers to create awareness about the rights of persons with disabilities, enhance understanding of their needs and inclusive policies. OPDs are in a position to provide this training and to help government steer policy direction that meets the rights and needs of persons with disabilities.
  • Train persons with disabilities to gain knowledge about exercising their rights and accessing available services on an equal basis with others.  Ensure access to and accessibility of information, including through alternate means of communication.
  • Provide disability training to organisations, and launch public campaigns to raise awareness and combat discrimination, negative stereotypes, and stigma associated with disability and gender. Involve persons with disabilities in the design and provision of training.
  • Invest in local research capacity, who can develop knowledge and skills to collect, analyse, disseminate and utilise data on disability. Include capacity building for researchers with disabilities.
  • Identify and develop a specific role of a policy champion to take a leadership role to coordinate and lobby for efficient implementation of the policies.
  • Establish a national monitoring and evaluation system to track the outcomes of disability inclusive policies and programmes such as education, employment etc. based on the disability-inclusive indicators (e.g. Disability SDG-CRPD framework) and explore barriers and facilitators.
Recognise the influence of intersectionality, and adopt a twin-track approach to promoting disability-inclusive development in all areas including education, health, employment, and social activities.

Key recommendation

Recognise the influence of intersectionality, and adopt a twin-track approach to promote inclusive disability development in all areas including education, health, employment, and social activities.

Action

  • Recognise the importance of embedding intersectionality at all stages of policy and programme formulation and implementation.
  • Promote an inclusive environment emphasising mainstreaming opportunities for people with disabilities to participate on an equal basis with others in all sectors such as education, health and employment.
  • At the same time, take a targeted approach to address the specific needs of persons with disabilities. For e.g., provide reasonable workplace accommodations based on the needs of persons with disabilities such as providing assistive technology, providing tailored training, appropriate feedback, and flexible working schedules.
  • Additionally consider the implication of specific characteristics such as gender (e.g. women) and geographical locations (e.g. rural areas) on persons with disabilities, and take appropriate affirmative actions to address the specific needs.
Improve and harmonise data collection to inform appropriate programme design and implementation as well as evaluate the impact of policies and programmes, using standardised approaches that allow disaggregated data by disability status.

Key recommendation

Improve and harmonise data collection to inform appropriate programme design and implementation as well as evaluate the impact of policies and programmes, using standardised approaches that allow disaggregated data by disability status.

Action

  • Use standardised questionnaires such as the Washington Group Short Set (WGSS) to collect data on disability in national censuses and surveys in order to understand the magnitude of need.
  • Use WGSS in conjunction with other measurement tools, i.e., included within a larger survey or registration form to enable disaggregation of other measures (e.g., educational attainment, employment status) by disability status, in order to understand the impact of disability.
  • Collaborate with academic researchers to conduct research on the impact of existing policies and programmes for persons with disabilities using both quantitative and qualitative research.
  • Undertake longitudinal studies to explore the long-term impact of the programmes and analyse the data using robust analysis methods such as advanced matching techniques, regression discontinuity designs, or interrupted time series to establish causality between the intervention and outcome of interest.
Further develop the evidence base to inform and guide policy making.

Key recommendation

Further develop the evidence base to inform and guide new policies and programmes.

Action

  • Undertake participatory research involving OPDs, persons with disabilities, policymakers, and disabled researchers to gather insights from the lived experience of persons with disabilities regarding challenges and identify the solutions to address barriers.
  • Identify locally relevant indicators such as the Disability SDG-CRPD framework, developed by the Economic and Social Commission for Western Asia (ESCWA), and agree on a quantitative benchmark to support the design of targeted policies and programmes for persons with disabilities.

Challenges

Challenge #1: Persons with disabilities are limited in participation due to barriers resulting from physical and virtual inaccessibility.

  • Accessibility is a precondition for an inclusive society for all, and for persons with disabilities to fully enjoy all human rights and fundamental freedoms. However, persons with disabilities continue to experience both environmental and attitudinal barriers. Research from the UN Department of Economic and Social Affairs indicate that about a quarter of persons with disabilities in Sub-Saharan Africa, Latin America, and Asia, have experienced environmental barriers to access health-care facilities, schools, workplace, and toilet facilities at home. 
  • Provision of accessibility needs incurs additional costs, e.g. the operational cost to construct inclusive buildings and WASH facilities can range between 0.5 per cent and 1 per cent of the total budget. All disability inclusive policies should recognise the additional cost of accessibility and have a dedicated funding stream. This will encourage programmes to consider disability inclusion in budgeting.

Challenge #2: Persons with disabilities frequently experience inequality and discrimination.

  • Widespread assumptions and misunderstanding about abilities of persons with disabilities are still prevalent in many settings. For example, prevailing stereotypes about capability to efficiently undertake employment, or whether persons with disabilities are sexually active. As a result, the rights of persons with disabilities are often overlooked and there is lack of political will to allocate adequate resources to overcoming this.
  • The heterogeneous nature of disability and barriers placed on people with different types of disabilities by society is often overlooked, leading to discordance between domestic laws and the UNCRPD framework. Meeting the requirements of persons with disabilities may also be influenced by the type and severity of impairment they experience, the assistive devices they find supportive, and the context in which they live. One review noted that often laws in East Africa do not explicitly recognise certain types of disability such as mental illness, making people who experience mental illness vulnerable to discrimination due to inadequate legal protection.
  • Furthermore, persons with disabilities face multiple disadvantages resulting from the interaction of different social attributes including gender, culture, race, age, education level, religion, geographical location, and legal status. They are further influenced by national and regional structures of power such as policies, laws, families, social norms, and religious beliefs. For e.g., employment related policies and programmes for women with disabilities need to take into account the implications of both gender and disability.
  • Although the majority of all nations have ratified the UNCRPD, there are still major gaps in the effective implementation of its principles into practice. Even when new, inclusive policies are developed, these are often not implemented in practice. A recent study reviewed reports from 19 countries on CRPD compliance and found that the reporting on psychosocial disabilities was of lower quality in low-income countries.

Challenge #3: Insufficient capacity to efficiently implement inclusive policies and programmes.

  • Capacity refers to both the structural and functional ability of an organisation (including government departments and civil society actors) to achieve its objectives, and is dependent on both tangible resources (e.g., human and financial) and intangible resources (e.g., leadership, political will). Capacity development is essential for both the policy process as well as at the level of specific programmes.
  • The UN disability and development report highlighted the lack of capacity among multiple stakeholders such as policy makers, persons with disabilities, organisations of persons with disabilities (OPDs), teachers, and employers. Capacity building is essential as it provides an opportunity for the relevant stakeholder to increase their understanding of the needs and then identify and implement appropriate strategies to enhance disability-inclusive policies and programmes.
  • UNCRPD Article 4.3 emphasises consulting and actively involving persons with disabilities, through their representative organisations, in all decision-making processes related to the development and implementation of policies and programmes for persons with disabilities. However, in practice persons with disabilities are seldom consulted (e.g. employment, hygiene, social protection), meaning their perspectives are ignored, which leads to policies and programmes that are not inclusive, need-based, and do not adequately address all the barriers experienced by persons with disabilities.
  • Even when persons with disabilities are consulted, for e.g. to support writing the UNCRPD country reports, the final decision to incorporate their inputs rests with the government departments. Another survey conducted by the International Disability Alliance (IDA) found that stakeholders are involved mostly in the implementation phase rather than seeking their input at all stages including development and evaluation of policies and programmes.
  • Lack of financial capacity can have an impact on the implementation of policies as well as the sustainability and feasibility of effective programmes such as mental health provision.

Challenge #4: Lack of consistent and good quality disability data.

  • Good quality disability data is essential to assess the needs of people with disabilities, and accordingly plan and implement specific policies and programmes. Disability can be measured and classified at a population level in a standardised way, to allow comparison of data both within and across nations. There is, however, lack of consistent and good quality disability data in accessible forms, and when data is collected, it is not consistently collated, disaggregated, and disseminated. A recent review of household surveys and censuses in LMICs found that only 31% included disability questions. Of these, half included functional difficulties questions such as the Washington Group Short Set (WGSS).

Challenge #5: The evidence base on what works for persons with disabilities in LMICs is sparse.

  • The evidence base around the effectiveness of disability-inclusive development programmes in LMICs is very low e.g., the existing body of evidence about the impact of labour market supports for people with disabilities in LMICs is inconclusive. In most cases, available evidence comes from a small number of studies implemented in a few settings, at a small scale, over a relatively short period of time, and from evaluations that used weak methodology.
  • In particular, there exists a significant gap in understanding how disability leads to extra costs of living and poverty in LMICs, which has direct relevance to informing the design of disability inclusive programmes.

Finding the answers

We conducted a review of reviews, examining systematic, narrative, and other types of review evidence on the topic of core principles for consideration in disability-inclusive policies and programmes. All recommendations are based on the findings of seven peer-reviewed literature; five policy reports; and recommendations across the following evidence briefs: Access to rehabilitation, Data collection methods, Disability inclusive development programmes, Employment, Hygiene, Mental health provision, and Social protection programmes.

Recommendations & actions

Enhance disability inclusion by reducing or eliminating the barriers and/or providing additional required measures to facilitate participation and inclusion.

Key recommendation

Enhance disability inclusion by reducing or eliminating the barriers and/or providing additional required measures to facilitate participation and inclusion.

Action

  • Develop and implement policies and strategies to eliminate the obstacles and barriers to accessibility, in areas related to transportation, health care, education, the justice system and information and communication technology, as well as in recreational and cultural activities and sports. At the same time, working to improve awareness and reducing attitudinal barriers in staff.
  • Apply the principles of universal design and international standards to eliminate barriers to both physical and virtual environment.
  • De-centralise services, for example procedures such as application process for disability-related programmes can take place locally within the community or in partnership with a public service facility such as post office.
  • Programmes must ensure that all activities being conducted with people with disabilities are accessible according to their needs e.g., meeting times and invitations sent well ahead so that necessary accommodations can be made; seminar rooms and halls have wheelchair access; close to transport links; sign language interpreters or guides are recruited; material and documentation is printed in large print or Braille and easy read summaries are available. These considerations should be reviewed by an advisory group of people with disabilities and be revisited and revised continually to reflect any changing or additional needs identified.
  • Global disability and development organisation such as the Light for the World recommend that disability inclusive projects should allocate about 2%-7% of the total budget to meet the extra cost associated with accessibility e.g. WASH facilities, reasonable accommodation needs. This budget allocation includes both administrative and operational costs.
Align national policies and programmes on disability with the UNCRPD framework.

Key recommendation

Align national policies and programmes on disability with the UNCRPD framework

Action

  • Strengthen national policies and programmes by ensuring they adequately address the CRPD principles. Existing laws and policies should be evidence-based and CRPD compliant.
  • Ensure the non-tokenistic participation of persons with disabilities as well as involving all stakeholders, including organisations of persons with disabilities as part of national policy and programme planning, and decision-making processes.
  •  Prohibit discriminatory practices on the basis of disability.
Take a collaborative approach to realising the rights of persons with disabilities, and invest in capacity development to achieve the Sustainable Development Agenda of ‘Leave no one behind.’

Key recommendation

Take a collaborative approach including persons with disabilities, and invest in capacity development to realise the goals of ‘Leave no one behind.’

Action

  • A wide range of stakeholders including policy makers, persons with disabilities, civil society organisations and local communities should collaborate in a democratic way at all stages of the process including identifying the problem, formulating the policy and/or programme to solve the problem, followed by its implementation, monitoring, and evaluation.
  •  Decision-making process should be driven by the  voices of persons with disabilities and OPDs at each stage.
  • Offer sensitisation programmes to all relevant stakeholders such as policymakers, members of civil society organisations, and service providers to create awareness about the rights of persons with disabilities, enhance understanding of their needs and inclusive policies. OPDs are in a position to provide this training and to help government steer policy direction that meets the rights and needs of persons with disabilities.
  • Train persons with disabilities to gain knowledge about exercising their rights and accessing available services on an equal basis with others.  Ensure access to and accessibility of information, including through alternate means of communication.
  • Provide disability training to organisations, and launch public campaigns to raise awareness and combat discrimination, negative stereotypes, and stigma associated with disability and gender. Involve persons with disabilities in the design and provision of training.
  • Invest in local research capacity, who can develop knowledge and skills to collect, analyse, disseminate and utilise data on disability. Include capacity building for researchers with disabilities.
  • Identify and develop a specific role of a policy champion to take a leadership role to coordinate and lobby for efficient implementation of the policies.
  • Establish a national monitoring and evaluation system to track the outcomes of disability inclusive policies and programmes such as education, employment etc. based on the disability-inclusive indicators (e.g. Disability SDG-CRPD framework) and explore barriers and facilitators.
Recognise the influence of intersectionality, and adopt a twin-track approach to promoting disability-inclusive development in all areas including education, health, employment, and social activities.

Key recommendation

Recognise the influence of intersectionality, and adopt a twin-track approach to promote inclusive disability development in all areas including education, health, employment, and social activities.

Action

  • Recognise the importance of embedding intersectionality at all stages of policy and programme formulation and implementation.
  • Promote an inclusive environment emphasising mainstreaming opportunities for people with disabilities to participate on an equal basis with others in all sectors such as education, health and employment.
  • At the same time, take a targeted approach to address the specific needs of persons with disabilities. For e.g., provide reasonable workplace accommodations based on the needs of persons with disabilities such as providing assistive technology, providing tailored training, appropriate feedback, and flexible working schedules.
  • Additionally consider the implication of specific characteristics such as gender (e.g. women) and geographical locations (e.g. rural areas) on persons with disabilities, and take appropriate affirmative actions to address the specific needs.
Improve and harmonise data collection to inform appropriate programme design and implementation as well as evaluate the impact of policies and programmes, using standardised approaches that allow disaggregated data by disability status.

Key recommendation

Improve and harmonise data collection to inform appropriate programme design and implementation as well as evaluate the impact of policies and programmes, using standardised approaches that allow disaggregated data by disability status.

Action

  • Use standardised questionnaires such as the Washington Group Short Set (WGSS) to collect data on disability in national censuses and surveys in order to understand the magnitude of need.
  • Use WGSS in conjunction with other measurement tools, i.e., included within a larger survey or registration form to enable disaggregation of other measures (e.g., educational attainment, employment status) by disability status, in order to understand the impact of disability.
  • Collaborate with academic researchers to conduct research on the impact of existing policies and programmes for persons with disabilities using both quantitative and qualitative research.
  • Undertake longitudinal studies to explore the long-term impact of the programmes and analyse the data using robust analysis methods such as advanced matching techniques, regression discontinuity designs, or interrupted time series to establish causality between the intervention and outcome of interest.
Further develop the evidence base to inform and guide policy making.

Key recommendation

Further develop the evidence base to inform and guide new policies and programmes.

Action

  • Undertake participatory research involving OPDs, persons with disabilities, policymakers, and disabled researchers to gather insights from the lived experience of persons with disabilities regarding challenges and identify the solutions to address barriers.
  • Identify locally relevant indicators such as the Disability SDG-CRPD framework, developed by the Economic and Social Commission for Western Asia (ESCWA), and agree on a quantitative benchmark to support the design of targeted policies and programmes for persons with disabilities.

Policy priorities

Strengthen national legislation, policies and programmes to ensure that all rights of persons with disabilities are protected and enshrined in national strategy, including equal access to all spheres of life including health, education, employment, justice system, and political participation. Adopt a collaborative approach including all relevant stakeholders such as persons with disabilities, representation from civil society organisations, and policy makers to realise the goal of ‘Leave no one behind.’ Institutional commitment and political will, including efficient budgeting process, should be reinforced to promote social and human rights model of disability. Advance the evidence base to inform and guide policymaking using participatory research and quantitative and qualitative studies. Use standardised questionnaires such as the Washington Group Short Set (WGSS) to collect data on disability in national censuses, and surveys, in conjunction with data collection of outcome indicators related to the CRPD-SDG framework. Use data disaggregated by disability status to inform the planning, implementation, monitoring, and evaluation of policies and programmes. Policy makers can use the equity and inclusion in policy processes framework (EquIPP) to inform the development, implementation, and evaluation of disability inclusive policies.

Conclusion

Persons with disabilities in LMICs continue to experience discrimination and limited opportunities to fully and effectively participate in everyday life. In this brief, we have summarised the core principles that policy makers in LMICs must consider when designing and implementing policies and programmes that fulfil the rights of people with disabilities.

Gaps & research needs

There is a limited robust evidence base on what works across disability-inclusive development and therefore a need to incorporate data collection into as many programmes as possible to evaluate impact and what works.  Further primary and secondary research should be undertaken to understand the best practice in the efficient application of the UNCRPD articles towards disability inclusive development policies and programme.

Acknowledgements

Peer review: This brief was reviewed by Kirsty Smith, CEO-CBM UK; and Nathaniel Scherer, Research Fellow, ICED, LSHTM.

Publication details: © London School of Hygiene & Tropical Medicine, July 2021.

Suggested citation: Felix Lambert, Mactaggart Islay, Shakespeare Tom, Qureshi Onaiza. Evidence Brief: What are the core principles that should be considered in the development of policies and programmes related to persons with disabilities in LMICs? Disability Evidence Portal, 2021.

Disclaimer: The views expressed in this publication are those of the authors and should not be attributed to Disability Evidence Portal and/or its funders.