Disability inclusive social protection

Daniel Mont PhD1 and Abner Manlapaz2

This ‘Disability equity and rights: Challenges, opportunities, and ways forward for inclusive development’ publication was prepared under the DFAT – CBM Inclusion Advisory Group Disability Inclusion Technical Partnership, an Australian aid initiative implemented by CBM Inclusion Advisory Group and the Nossal Institute for Global Health at the University of Melbourne.

This publication has been funded by the Australian Government through the Department of Foreign Affairs and Trade. The views expressed in this publication are the author's alone and are not necessarily the views of the Australian Government.

Background

Social protection programs are especially important for people with disabilities who are more vulnerable to negative shocks and face greater barriers to social and economic participation. Evidence shows people with disabilities are more likely to be poor, have greater difficulty accessing health care, including a greater need for rehabilitation services, and have lower rates of education and employment and higher rates of being subject to violence. 3 4,5 6,7 8

In the past, social protection programs took a charity approach to addressing these vulnerabilities or a wage replacement philosophy. Benefits were designed to provide a minimum level of consumption and/or to substitute for wages that were lost due to the inability to find or undertake livelihood generation.

The UN’s Joint Statement on Inclusive Social Protection builds on the Convention on the Rights of Persons with Disabilities (CRPD) and establishes a human rights-based approach to social protection.9 This entails:

  • moving away from using ‘incapacity to work’ to determine program eligibility
  • moving away from institutionalised care, to support for living in the community, for which social protection can play a vital role
  • accounting for the extra costs of disability, which can vary dramatically in amount and type of expenditure depending on the nature of a person’s disability. As such, a ‘one-size-fits-all’ approach is inconsistent with effective eligibility determination or to the design and delivery of benefits.

According to the Joint Statement, an inclusive social protection program should:

  • ensure income security that enables access to necessary goods and services
  • ensure coverage of disability-related costs and facilitate access to the required support, including services and assistive devices
  • ensure effective access to health care, including disability-related medical care and rehabilitation, as well as HIV services
  • improve access to services across the life cycle, such as childcare, education, vocational training, support with employment and livelihood generation, including return to work programs
  • account for the diversity of people with disabilities, both in terms of type of disability and other factors such as age, gender, and ethnicity.

Two fundamental issues relating to disability inclusive social protection are the determination of the nature of the extra costs facing people with disabilities and the mechanisms for assessing the needs of people with disabilities within a country’s context.

Opportunities and challenges

Extra Costs

One challenge in designing inclusive social protection systems is addressing the extra costs of living incurred by people with disabilities. Research shows that these are highly significant.10 Two households with similar levels of income – one with a household member with disability and one without – will not have the same standard of living. This is because the household with a person with a disability has additional needs. Accounting for the costs of these extra needs when drawing poverty lines yields significantly higher poverty rates for people with disabilities. Without these costs being met, people with disabilities are subjected to a reduced quality of life and increased barriers to participation in the economic and social life of their communities.

Extra costs vary significantly by type and degree of disability, as shown in Figure 1 below from a UNICEF study in Georgia that looked at disability costs among children.11 This figure shows the monthly costs for children with high support needs by type of disability (Deaf-blind, complex medical, behavioral, physical, intellectual, hearing, visual and psychosocial). This includes the total monthly costs and how these costs are distributed by type of spending. Clearly a single size cash transfer would not align with how these costs are incurred. Further, any program targeted on a specific good or service – for instance, assistive technology or rehabilitation – would cover a very different percentage of total costs depending on a person’s situation.

Methodologies have been developed to measure the costs required for equal participation between people with and without disabilities. In addition to Georgia, there is ongoing work in Peru and Tamil Nadu and upcoming work in Fiji and Nigeria. The approach of assessing the individual needs of people with disabilities and tailoring benefit packages to them is becoming more common in high income countries, such as in Australia, France and Ireland.

Figure 1. Order of disability subgroups’12 high support needs according to distribution of monthly costs among GEL (currency of Georgia) cost categories13

This graph shows the amount of extra expenditures required by people with high support needs based on type of disability - deaf-blind, complex medical needs, behavioral, physical, intellectual, vision, hearing, and psychological. Those amounts differ widely, and the breakdown in those expenditures between assistive technology, personal assistance, rehabilitation, health and mobility/accessibility also vary significantly by type of disability

Disability Assessments

To meet these costs, a needs assessment is required. The sophistication of this assessment will depend on the country context, for example the number and capacity of people doing such assessments. But they all serve the same function, which is to identify the difficulties people with disabilities have undertaking activities and the types of supports people with disabilities need to participate in daily life on an equal basis with others.

It should be noted that the determined needs (and associated costs) are those existing in the current environmental context with the current barriers in place. Meeting those needs, and reducing those costs, can be achieved both through providing individual-level benefits as well as introducing policies that eliminate the barriers that create those costs. For example, extra costs associated with transportation could be reduced by making public transportation more accessible. However, no matter how many barriers are removed, people with disabilities will have extra costs associated with their needs.

A responsive social protection system requires a disability assessment that adheres to a human rights-based approach. The assessment can help determine eligibility in obtaining legal disability status and collect information relevant to accessing services, particularly disability-specific support services that promote the inclusion and participation of people with disabilities. It is important that assessments go beyond eligibility determination to identify what goods and services a person with disabilities requires.

It is important that the assessment is accessible, affordable, reliable, comprehensive, and compliant with the CRPD. Furthermore, it must gather data on support needs of children, working-age adults, and older people with disabilities with the goal of enabling better case management and more effective referral to existing services. Additionally, this data should have relevant information that will inform decision-makers in developing policies and programs supporting inclusion and participation of people with disabilities in the community.

The disability assessment system should be localised and designed to make it interoperable with other existing local and national data systems to maximise usage. For example, in the Philippines, all local governments are required to establish and maintain a Community-Based Monitoring System for developing and implementing social protection programs both at local and national level.

Various data tools exist (for example, the International Classification of Functioning, the Model Disability Survey, and early childhood care and development checklists) as well as assessment tools (the Functional Independence Measure, or FIM, in Fiji) and more expansive tools in high income countries (such as in France and Australia) that can provide frameworks for different components of the disability assessment. However, as stated above, the assessment must align with the capacity of the government to administer an assessment tool, the goods and services available in the country, and the nature of participation. A limitation in that capacity, of course, is not an excuse for not expanding social protection and/or making it more inclusive. Part of those efforts could be to increase that capacity, both to assess needs and build policies and programs that address them.

A recent pilot test of an assessment tool designed for the Philippines showed that for the disability assessment system to be truly localised, local knowledge and practices have to be incorporated throughout the development process. This increases the tool’s validity and acceptability. The multi-stakeholders’ group who should be involved in developing the disability assessment system includes local and national government agencies and offices, organisations of people with disabilities, health and allied professionals, special education teachers, and community-based workers such as child development workers. In the Philippines, multi-stakeholder group knowledge and practices contributed to the design of the system, including the content of the disability assessment tools, how the tools will be administered, accountability mechanism, and the mechanism for case management and referral to services. With real intention to use local knowledge and practices, the disability assessment system creates ownership resulting in a more suitable and acceptable system designed to address issues of accessibility, feasibility, and affordability in the local context, as well as ensure coordination and interoperability with other services.

Looking ahead to 2030

The recommendations below outline ways in which donors and governments can work together to make social protection systems more inclusive and promote the participation and wellbeing of people with disabilities.

  1. Social protection system evaluation. Assist countries to evaluate their current social protection systems for compliance with the CRPD and the Joint Statement on Inclusive Social Protection, with recommendations on how to improve that compliance.
  2. Extra Cost Studies. Support countries to undertake studies that estimate the goods and services required for equal participation, their availability and accessibility, and how the nature and extent of those costs vary over the life cycle by type and degree of disability and gender.
  3. Disability Assessment design. Assist countries to develop disability assessments that identify the support needs of people with disabilities necessary for the delivery of those services. This must be driven in a way that is feasible given the current country context, which can also help with planning programs and policies to provide them.
  4. Social protection system design. Based on the results of the above, offer assistance with reforming the social protection system to ensure it is CRPD-compliant and promotes the participation of people with disabilities.

Authors

Daniel Mont, Center for Inclusive Policy, is the CEO and co-founder of the Centre. Daniel works with international agencies on improving data for inclusive development with a focus on social protection, education, and employment policies. Previously a senior economist with the World Bank, he holds a PhD in economics.

Abner Manlapaz, Life Haven Center for Independent Living is a senior associate of the Center for Inclusive Policy. He works with OPDs, NGOs, government and UN agencies to advance disability inclusive programs and policies focusing on disability data, social protection, community support services, and accessibility.

References
  1. Centre for Inclusive Policy. Lead/corresponding author: Daniel Mont, daniel.mont@inclusive-policy.org
  2. Life Haven Center for Independent Living. abner.manlapaz@gmail.com
  3. Mitra S and Yap J. 2021. The Disability Data Report. Disability Data Initiative. Fordham Research Consortium on Disability, New York. https://disabilitydata.ace.fordham.edu/reports/disability-data-initiative-2021-report/
  4. Banks M, Kuper H, and Polack S. 2017. Poverty and disability in low-and middle-income countries: A systematic review. PloS one, 12(12). https://doi.org/10.1371/journal.pone.0189996
  5. United Nations Educational Scientific and Cultural Organization. 2020. Inclusion and Education: all means all, Global Education Monitoring Report. https://unesdoc.unesco.org/ark:/48223/pf0000373718
  6. Mizunoya S and Mitra S. 2013. Is there a disability gap in employment rates in developing countries? World Development, 42, pp.28-43.
  7. Mitchell R J, Ryder T, Matar K, Lystad R P, Clay‐Williams R, and Braithwaite J. 2022. An overview of systematic reviews to determine the impact of socio‐environmental factors on health outcomes of people with disabilities. Health & social care in the community, 30(4), pp.1254-1274.
  8. Mailhot Amborski A, Bussieres E L, Vaillancourt-Morel  M P, and Joyal C C. 2022. Sexual violence against persons with disabilities: A meta-analysis. Trauma, Violence, & Abuse, 23(4), pp.1330-1343.
  9. United Nations. 2019. Joint Statement Towards Inclusive Social Protection Systems. https://www.social-protection.org/gimi/gess/RessourcePDF.action?ressource.ressourceId=55473
  10. Mont D, Cote A, Hanass-Hancock J, Banks L M, Grigorus V, Carraro L, et al. 2022. Estimating the Extra Costs for Disability for Social Protection Programs. https://www.social-protection.org/gimi/RessourcePDF.action?id=57850
  11. United Nations Children’s Fund. 2023. The Cost of Raising a Child with Disabilities in Georgia. https://www.unicef.org/georgia/media/8421/file/The%20Cost%20of%20Raising%20a%20Child%20with%20Disabilities%20in%20Georgia.pdf
  12. The disability subgroups listed on the x axis are identified as follows: Def-Bl (deaf-blind), Comp (complex medical needs), Bh (behavioural), Phis (physical), Intel (intellectual), Hear (hearing), Vis (visual) and Psych (psychosocial).
  13. United Nations Children’s Fund. 2023. The Cost of Raising a Child with Disabilities in Georgia. https://www.unicef.org/georgia/media/8421/file/The%20Cost%20of%20Raising%20a%20Child%20with%20Disabilities%20in%20Georgia.pdf

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