Towards Disability Inclusive Programme Monitoring
Introduction
Who is this guide for?
This guide is specifically developed for those who are involved in monitoring and evaluation of humanitarian aid and development programmes and policies. However, proposal developers, programme managers, field coordinators and anyone else who is involved in the development and implementation of such programmes may find this guide helpful.
Why This Guide?
It is estimated that roughly 22 percent of people in the poorest communities in low and middle-income countries have a disability. Development and humanitarian organisations are increasingly taking note of the exclusion of people with disabilities from development opportunities. Exclusion from society and the lack of statistics on the situation of people with disabilities go hand in hand. Those who are not counted are not seen. Their invisibility in mainstream monitoring efforts means that it is likely that policies and programmes are not designed with their needs in mind. How can we break this cycle of invisibility?
The UN Convention on the Rights of Persons with Disabilities (CRPD) and the Sustainable Development Goals (SDGs) both call for equal opportunities for all – and they both emphasise the importance of data for monitoring inclusion. Goal 17 of the SDGs refers to the need for data disaggregation by disability status.
Many organisations have started taking measures for disability inclusion in their programmes. Yet, there is often little insight into how disability inclusive these programmes really are. Is the number of people with disabilities in your programme representative of the number of people with disabilities in your target areas? Do they enjoy the same benefits and results from the programme as other participants, or do they face barriers to equal participation?
This Quick Guide will help you find an answer to these questions by taking 7 steps throughout the programme cycle!
Key facts about persons with disabilities
Contents
What is the global prevalence rate of disability?
When should I be worried about disability inclusion in my programme?
How do I set target indicators for disability inclusion in my programme?
What tools are used to identify persons with disabilities?
Is it allowed to collect data about a person’s disability status?
As the UN Convention on the Rights of Persons with Disabilities (UNCRPD) defines:
“persons with disabilities include those who have a long-term physical, mental, intellectual or sensory impairment which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others”.
Thus, a disability always consists of two elements: an impairment and the barriers in society. These barriers can concern social attitudes, communication, environment and/or institutions (laws and policies).
Disability-inclusive monitoring involves analysing whether and how the concerns and needs of persons with disabilities are being included and met in a programme. This can only be achieved if you use data collection instruments that allow for the disaggregation of key indicators according to disability status. Another aspect of disability inclusive monitoring is the active involvement of persons with disabilities in the data collection processes and the validation of the outcomes that concern them.
Disaggregation of data means that you are breaking down data into subgroups and comparing data from each of these subgroups. If you disaggregate all data by disability (as well as sex, age, etc.) this enables comparison between women, men, girls and boys with disabilities and other groups of people. This means you compare certain data (for example level of income, or years of schooling) between persons with and persons without disabilities. It enables you to see if persons with disabilities are achieving results on the same level as persons without disabilities. When you want to disaggregate by disability, you first need to identify how many people with disabilities there are among the target population by using appropriate data collection tools. This will give insight into whether they are fully and equitably participating in your project, in comparison to the general population.
Consider the following example from the Disability Data Report 2022 regarding education indicators among women. Below you find a diagram that is disaggregated three ways – no disability (the blue bars), moderate disability (the striped bars), more significant disability (the orange bars). You can see that as the degree of disability goes up, literacy goes down as does completion of secondary school. And as the degree of disability goes up the more likely someone is to have less than primary school.
Collecting data on people’s disability status gives us information on disability prevalence (how many people there are). By disaggregating outcome indicators we can also see where exclusion is occurring. However, it does not yet tell us what to do about it. We also need information on barriers and support needs, for example through surveys or consultations, to craft appropriate policies and programs.
Frequently Asked Questions
- What is the global prevalence rate of disability?
- When should I be worried about disability inclusion in my programme?
- How do I set target indicators for disability inclusion in my programme?
- What tools are used to identify persons with disabilities?
- Is it allowed to collect data about a person’s disability status?
- Why is disability inclusive programme monitoring important?
WHO reports that about 15% of the world’s population has a disability. This is over 1 billion people. More than 46% of older persons – those aged 60 years and over— have disabilities and more than 250 million older people experience moderate to severe disability. Looking ahead, the global trends in ageing populations and the higher risk of disability in older people are likely to lead to further increases in the population affected by disability. In addition, UNICEF reports there are nearly 240 million children with disabilities, 10% of all children in the world.
From a monitoring and evaluation perspective, you should be worried when:
- The percentage of people with disabilities participating in your programme activities is unrealistically low (compared to the prevalence of disability among the general population in your area);
- There is very little diversity among people with disabilities participating in your programme activities. Disability lies along a continuum from none to moderate and severe; and it includes a wide variety of physical and mental conditions. For example, if only persons with a moderate physical impairment are participating, then your programme is probably overlooking barriers faced by persons with other types of disabilities.
When persons with disabilities are participating, but are not performing equally on the (outcome) indicators. Then there are barriers in the programme activities that need to be explored and addressed.
There are three main ways to determine target indicators for inclusion of people with disabilities in your programme:
- Baseline data – By including questions regarding disability in your baseline surveys, you will be able to gather rich information on the prevalence and the situation of persons with disabilities in your target area. This is the best possible way to develop quantitative and qualitative indicators regarding disability inclusion.
- Prevalence studies – Government authorities or Organisations of Persons with Disabilities (OPDs) may have prevalence studies available for your target area. Based on the general prevalence of disability, you may want to set a target percentage for participation of persons with disabilities in your programme. However, don’t be surprised if existing disability statistics look contradictory. Very often disability is underreported, as a result of inappropriate definitions of disability and data collection methods that are used. So always look critically at the method and definition used, and use data from different sources.
- Rough estimates – When prevalence studies are not available, the global average of 15% of the world population having a disability can provide a rough reference point. Beware, however, that averages can vary considerably. Factors influencing this can be the age of your target population, or general access to healthcare, for example.
The most important things to keep in mind during this process are: to use appropriate methods for data collection and to involve persons with disabilities (at all stages). Under steps 2 to 5 you will find more detailed information and tools for this, including resources with example indicators for different sectors.
There are different ways to identify whether someone has a disability. Which tool you use will be dependent on what type of data you need to collect and how you will measure it. For monitoring at programme level, the most commonly used tool is a set of questions (Washington Group Questions) that ask about people’s performance of basic activities, such as whether people have difficulty walking, seeing or communicating with others. These questions effectively measure people’s level of functioning and identify those who are at risk of exclusion because of barriers in the environment. It is important to note that this tool cannot be used for diagnosing a medical condition: only trained personnel such as a qualified doctor or health professional can formally diagnose a health condition or impairment. It is also not suitable for identifying which persons could be potential beneficiaries for specific services for persons with disabilities. Read more about the use of the Washington Group Questions under step 4 of this Quick Guide.
The International Classification of Functioning, Disability and Health (ICF) is based on a model of disability that sees it as arising from an interaction between a person’s capabilities (limitation in functioning) and environmental barriers (physical, social, cultural or legislative) that may limit their participation in society. It can be used as a tool to measure health and disability at both individual and population levels. This framework is used when more in-depth information is collected; therefore we do not address it in this Quick Guide. For more information on this framework, please visit this WHO webpage.
Yes, it is allowed, but you have to keep the legal requirements and ethical consequences in mind. Within the European Union your data collection processes have to be in line with the General Data Protection Regulation, GDPR. Needless to say that we should use the same privacy standards when working outside the European Union. The GDPR stresses that data can only be collected if confidentiality and legal requirements are met. Data about persons with disabilities fall in the category of sensitive data, so this requires specific attention and protection measures. Since we are dealing with sensitive information, it is important that you only collect data that is really needed and used within your programme. For the purpose of identifying (under)representation of persons with a disability or disability-related barriers within your programme, it is usually not needed to collect detailed medical information in relation to a person’s disability. So stick to the bare minimum and only collect the information that you need to know to make your programme inclusive. And, when you are only going to use the data at group level, it is often not necessary to store disability information along with information such as name and address. Make sure that staff that are involved in the collection, storing and using the data are aware of the sensitivity and confidentiality of the collected information.
Inclusion in data collection and monitoring will make persons with disabilities visible and will help to design programmes and policies that meet their needs. By doing so, you are fulfilling your responsibility to uphold the rights of persons with disabilities to be included in development and humanitarian aid programmes.
Specifically, disability inclusive programme monitoring:
- will help you identify the total number of persons with disabilities within your project area and to mobilise appropriate resources that ensure inclusion.
- will give your organisation insight into what extent persons with disability are included in and benefitting from your programme interventions. Based on the outcomes your organisation can take corrective measures to remove barriers that are blocking equal participation.
- will help you to be accountable to your target group and to learn about the views and needs of persons with disabilities.
- will help you generate data for evidence-based lobby and advocacy.
- will help you meet the requirements of institutional donors.
Legal & Policy Framework
2006
UN Convention on the Rights of Persons with Disabilities – Article 31 on Statistics and Data Collection
2011
WHO World Report on Disability
2015
2030 Agenda for Sustainable Development (2015) – 11 SDGs indicators specifically refer to the rights of persons with disabilities. SDG 17 refers to disaggregation of data on disability.
2015
Sendai Framework for Disaster Risk Reduction (2015) calls for collection of disability disaggregated data.
2016
Charter on Inclusion of Persons with Disabilities in Humanitarian Action (2016) calls for collection of disability disaggregated data to assess the accessibility of services, assistance and policies.
2018
Inclusive Data Charter (2018) inspires political commitment to deepen data disaggregation to understand the needs of the most marginalised in society.
2018
OECD Development Assistance Committee (DAC) adopts the disability marker (2018) to measure how much budget OECD countries spend on inclusion and empowerment of persons with disabilities in Overseas Development Assistance.
- Disability Inclusive Data Collection
- Disability and SDGs
- OECD DAC Disability Marker
- Relevant Networks
| Name & Link | Organisation | Description |
|---|---|---|
| Online Course: Collecting Data on Disability and Inclusion | World Bank Group | The Collecting Data on Disability Inclusion course provides an understanding of who persons with disabilities are, measuring different types of disabilities using international standards, collecting data for different demographics and for different parameters, and analysing the data. |
| Producing disability-inclusive data | UNICEF | Looking for more detailed information on why disability inclusive data collection matters and what it takes to do so? Then this guide will give you a great overview of steps to take. |
| Practice note: Collecting and using data on disability to inform inclusive development | Plan international, CBM Australia, Nossal Institute | This guide provides thorough insight in using tools for disability data collection. |
| Inclusion works | See you Foundation | This lessons learned document about a disability inclusive food security project provides a practical example of disability inclusive data collection in a programme. It will offer you great insights in the do’s and don’ts. |
| Name & Link | Organisation | Description |
|---|---|---|
| World report on disability 2011 | WHO/ World Bank | Looking for reliable data about persons with disabilities? This report helps you understand the barriers people with disabilities experience in accessing health, education, work and employment. |
| UN Flagship Report on Disability and Sustainable Development Goals | Department of Economic and Social Affairs Disability, United Nations | Want to know how the SDGs refer to inclusion of persons with disabilities? Then this report is a must-read. |
| Resources on Disaggregation and SDGs | Washington Group on Disability Statistics | Do you want to take a deep-dive into SDGs and data disaggregation? On this website you will find helpful resources. |
| Disability Data Report 2022 | Disability Data Initiative | Want to understand more about the inequalities faced by women with disabilities? This report disaggregates 32 indicators by disability status using data from MICS6 for women aged 18 to 49 in 35 countries. |
| Name & Link | Organisation | Description |
|---|---|---|
| Disability-inclusive ODA: Aid data on donors, channels, recipients factsheet | Development Initiatives | Want to know how much donors spend on disability inclusive development? This report gives you good insight. |
| The OECD-DAC policy marker on the inclusion and empowerment of persons with disabilities. Handbook for data reporters and users. Version 1.0 | OECD DAC | Want to know how to score programmes on the DAC Disability Marker? Check this handbook for data reporters. |
| Getting the data: how much does aid money support inclusion of persons with disabilities. A guide for advocates. | Center for Inclusive Policy | Want to use data from the DAC Disability Marker in your advocacy towards donors? This guide explains how to find and analyse the available data. |
| Organisation | Description | What should you use them for? |
|---|---|---|
| Washington Group on Disability Statistics | The Washington Group on Disability Statistics is a United Nations Statistical Commission that aims to provide information on disability that is comparable throughout the world. They also have regional working groups as well. | Looking for state of the art information about disability statistics? This is the first place to go. |
| Disability Data Initiative | This initiative of Fordham University, World Bank and Wellspring provides analyses of disability data to help advance the rights of persons with disabilities and sustainable human development for all. | Looking to understand data disaggregation on various socioeconomic indicators – and the conclusions we can draw from data sets across countries? Check out their latest global reports. |
| Disability Data Advocacy Working Group | Global platform on disability data collection that was set up by the International Stakeholder Group of Persons with Disabilities of the International Disability Alliance. | Are you interested in learning and dialogue, sharing of good practices, and collaboration on disability data collection, disaggregation and analysis? Become a member or subscribe to the newsletters. |
| International Disability Alliance | IDA brings together over 1,100 organisations of persons with disabilities (OPDs) and their families from across eight global and six regional networks. IDA represents the estimated one billion people worldwide living with disabilities. | Want to get in touch with national/international and regional OPDs? On the IDA website you will find all the contact details. |
| International Disability and Development Consortium | IDDC is an international network of civil society organisations promoting inclusive development and humanitarian action. | Check the world map on the website to find out which IDDC member is active in which country. |
| Dutch Coalition on Disability and Development | DCDD is a Dutch network for disability inclusion whose participants are active in more than 70 countries worldwide. | Looking for a partner to work on disability inclusive programmes and get support on inclusive data collection and monitoring? Contact us at dcdd@dcdd.nl. We will happily connect you to partners in our network. |
| Partos – Leave No One Behind Platform | Partos’ LNOB Platform consists of Dutch organisations and actors in the field of development cooperation, concerned with ending poverty and exclusion through knowledge exchange and innovative solutions. | Keep an eye on their agenda for interesting events! |
Steps towards disability inclusive programme monitoring
Where to start if your organisation wants to move towards disability inclusive monitoring and data collection? The most logical starting point is when a policy, new project, or programme is designed. To the right, you will find an overview of the steps you can take throughout the project cycle. In the following paragraphs, we will highlight the key steps in more detail and give you tools you can use.
The Steps:
- Work from a rights-based approach and collaborate with organisations of persons with disabilities
- Make the whole data collection process inclusive
- Formulate (sector-specific) disability inclusive indicators
- Prepare for data disaggregation
- Collect baseline data on disability and inclusion
- Monitor inclusion and equal participation of persons with disabilities and adjust implementation where needed
- Evaluate disability inclusion and use the lessons learned for future programming, policy development and reviewing the organisational monitoring mechanisms
When you design a programme you will – most likely – first develop a theory of change. Your data collection strategy will be informed by these strategic choices. However, there may also be situations where disability is only implicitly mentioned in the theory of change, with the result that it is also not specifically worked out in the data collection strategy. So what to do if you want to start with disability inclusive data collection when a programme is already running? This is of course, not an ideal situation, but there are always possibilities! You can for example add a disability component in a survey or evaluation or you can start collecting disability data in one project location. Or simply begin with studying publicly available data and statistics about persons with disabilities. In the following chapters we will give you more background information for each step. There you will also find a selection of specific tools and resources for each step in the process.
Step 1.
Work from a rights-based approach and collaborate with organisations of persons with disabilities
Work from a rights-based approach and collaborate with organisations of persons with disabilities
In order to be able to monitor and make data collection processes disability inclusive, it is key to work from a rights-based approach towards disability and inclusion. This means that you follow the principles and philosophy of the UNCRPD. This also has implications for how you define and measure disability. The UNCRPD says that disability arises from the interaction between a person’s impairment and the barriers they face to full participation in their community on an equal basis with others. How you look at disability will also influence how you collect and interpret data. The first step to take here is to familiarize yourself with the basic concepts of disability inclusive programming and to get a good understanding of the barriers that persons with disabilities may face in accessing development or humanitarian programmes.
“Nothing about us without us” is a basic principle of the UNCRPD. This means that persons with disabilities and their representative organisations should be involved in the whole project cycle and at every stage of the data collection process. Only by involving persons with disabilities and their organisations you will get an accurate insight into the views and opinions of this group.
We have selected some key resources that help you to get started and get a better understanding of disability and disability inclusive programming as well as how to cooperate.
| Name & Link | Organisation | Description |
|---|---|---|
| Practice note: Collecting and using data on disability to inform inclusive development | Plan international, CBM Australia, Nossal Institute | Looking for quick insight in the basic concepts of disability and inclusion from a rights-based approach? On page 9 & 10 you will find them all listed and explained. |
| Count me in. A practical guide about inclusion of persons with disabilities in development programmes. | See You Foundation | Looking for a more detailed explanation about disability inclusion in development programmes? You will find all details in this publication. |
| Resource Book on Disability Inclusion | Light for the World | Looking for more background information, tools, checklists and practical tips about disability inclusive programming: check this extensive resource book. |
| Name & Link | Organisation | Description |
|---|---|---|
| Disability Data advocacy toolkit | CBM, Stakeholder Group of Persons with Disabilities, IDA | Looking for more info on the role of Organisations of Persons with Disabilities in data collection? The toolkit provides practical information, case studies and contact details. |
| Practice note: Collecting and using data on disability to inform inclusive development | Plan international, CBM Australia, Nossal Institute | Looking for best practices on collaborating with persons with disabilities and their organisations? You will find them in this practice note. |
| Persons with disabilities and data inclusion | Elizabeth Lockwood, Mohammed Ali Loutfy and Sally Nduta | Want to know why it is important to engage persons with disabilities and their organisations in data collection and analysis? This article pleas for evidence-based advocacy to influence policy and decision-makers. |
Some Practical Tips
- Organize a training for your organization on the basics concepts of disability and inclusion in cooperation with a local organization of persons with a disability.
- Take time to invest in long-term partnerships organisations of persons with disabilities.
- Whatever role organisations of persons with disabilities are fulfilling within the data collection, monitoring or evaluation, you have to make sure they will get a fair compensation for the time an efforts they put into this. You cannot expect them to fulfil this role on a voluntary basis.
- When you seek collaboration with organisations of persons with disabilities make sure their participation is meaningful. This means that participation should be aimed at the highest level of shared decision-making on all issues that concern them.
- The role of persons with disabilities and their organisations within a programme can be diverse: they can build capacity of your staff, raise awareness within communities, as well as give you feedback on the accessibility of your data collection methods, review the relevance of your indicators and support data collection by making sure your surveys reach persons with disabilities in your target communities.
- To ensure meaningful participation you may also need to support persons with disabilities and their organisations to strengthen their knowledge and skills on sector specific themes and/or monitoring and data collection in general.
Step 2.
Make the data collection process inclusive
Make the data collection process inclusive
You will only be able to get insight in the needs, views and opinions of persons with disabilities if the whole collection process is accessible for persons with disabilities. If a stakeholder meeting is organised at an inaccessible building, persons with disabilities will be less like to attend and their voices will not be heard. If a data-collector does not know how to communicate with someone who is deaf, they may simply exclude this person from the survey.
| Name & Link | Organisation | Description |
|---|---|---|
| Producing disability-inclusive data | UNICEF | This guide explains how you can make the whole data-collection process accessible and inclusive. A must read! |
| Name & Link | Organisation | Description |
|---|---|---|
| Disability Inclusive Communications Guidelines | UNDIS | Are you looking for practical advice on how to make your communications disability inclusive, these guidelines give you all the details! From digital publications to face to face meetings. |
| Disability Inclusive Language Guidelines | UNDIS | Want to know what terms to use when talking about persons with disabilities? Check these language guidelines. |
Some Practical Tips
- Train your programme staff (and particularly staff involved in monitoring, evaluation and learning) on disability inclusive communication and how to organise inclusive meetings.
- Adapt data collection methods and tools in such a way that communication barriers are overcome.
- Make sure that measurement tools do not reflect ideas about disability that foster exclusion or stigmatization.
- Reserve a budget for hiring sign language interpreters when you are collecting data from persons with disabilities.
- Give persons with disabilities an active role in the data collection: they can for example be hired (and trained if necessary) as data collector.
- Involve persons with disabilities at all stages, so also in the analysis and validation of collected data.
- Make sure the outcomes of data collection are shared in accessible formats.
Step 3.
Formulate (sector specific) disability inclusive indicators
Formulate (sector specific) disability inclusive indicators
To measure whether persons with disabilities are able to access services and are able to participate and benefit from your programme on an equal basis with others, it is important to formulate indicators that will help understand if inclusion is happening. You can do this by making all the indicators in your programme disability inclusive through data disaggregation. Next to disability inclusive indicators it is also important to formulate specific indicators that can give you insight in the inclusion and participation of persons with disabilities in your programme(s). So the indicators should also detail if the activities are accessible to persons with disabilities.
The type of indicators that you will need to develop, depends on the sector that you are working in. Below we have listed some key resources for different sectors. Disability inclusion is relevant in every sectoral programme. We know the list of topics is not complete, but this will at least give you a good start. We have also included some information on monitoring inclusion of children, women and intersectionality.
- General/ different sectors
- Work & Employment
- Humanitarian action
- WASH
- Women and girls /Intersectionality
- Education/ Children with disabilities
| Name & Link | Organisation | Description |
|---|---|---|
| Guide: Monitoring and Evaluation Strategies for Disability Inclusion in International Development | Chemonix | Looking for guidance on formulating indicators? This guide gives tips and example indicators for sectors like Health, Education, Economic Growth, Governance and Political participation. |
| Human Rights indicators for the Convention on the Rights of Persons with Disabilities in support of a disability inclusive 2030 Agenda for Sustainable Development | Bridging the Gap | Looking for indicators that help you to monitor participation and inclusion of persons with disabilities in the implementation of the 2030 Agenda? Have a look at this list of indicators. |
| Name & Link | Organisation | Description |
|---|---|---|
| WG ILO Labor Force Survey Disability Module (LFS-DM) | The Washington Group on Disability Statistics | Working on inclusion in employment? Use the Washington Group ILO Labor Force Survey Disability Module to create surveys on inclusion in the labour force. |
| Name & Link | Organisation | Description |
|---|---|---|
| Should you use the WG in your humanitarian programming? | The Washington Group on Disability Statistics | This tool helps you decide whether using the WG questions is appropriate in the context of your humanitarian aid programme. |
| Disability Data Collection: A summary review of the use of the Washington Group Questions by development and humanitarian actors | Leonard Cheshire, Humanity & Inclusion | Are you working in the humanitarian field? This paper discusses the use of the Washington Group Set of Questions in the humanitarian setting and identifies possible entry points – offering many practical insights! |
| Collecting Data for the Inclusion of Persons with Disabilities in Humanitarian Action | Humanity & Inclusion | Want to learn more about planning for and using the Washington Group Questions to identify persons with disabilities in humanitarian action? This self-directed course helps you to get started. |
| IASC Guidelines on the Inclusion of Persons with Disabilities in Humanitarian Action | IASC | Want to know more about data collection in humanitarian action? Chapter 4 gives you a good introduction on the topic. |
| INCLUDING EVERYONE Strengthening the collection and use of data about persons with disabilities in humanitarian situations | UNICEF | Check this publication if you are looking for tips and examples how disability data can make a difference in humanitarian situations. |
| Name & Link | Organisation | Description |
|---|---|---|
| MAKE IT COUNT: Guidance on disability inclusive WASH programme data collection, monitoring and reporting | UNICEF | Looking for tips to collect disability data in your WASH programme? This guide will help you to monitor and report the results and impact of WASH programmes for persons with disabilities. |
| Name & Link | Organisation | Description |
|---|---|---|
| Making the SDGs count for women and girls with disabilities | UN Women | This issue explains why inclusion of women and girls with disabilities is so important. |
| Women Enabled Resource center | Women Enabled International | Looking for publications and resources on human rights at the intersection of gender and disability? You will find them here. |
| Intersectionality Resource Guide and Toolkit. An Intersectional Approach to Leave No One Behind. | UN Women/ UNPRPD | If you want to deepen your understanding and apply an intersectional approach to your work. this Resource Guide and Toolkit is a great starting point. |
| Name & Link | Organisation | Description |
|---|---|---|
| WG/UNICEF Child Functioning Module (CFM) | The Washington Group on Disability Statistics | Working with children between the ages of 2 to 17? Use the Washington Group’s Module on Child Functioning, which has been developed in collaboration with UNICEF. |
| HOW-TO NOTE: Collecting Data On Disability Prevalence In Education Programmes. | USAID | Looking for practical guidance on collecting data in education programmes? This guide helps you to get started. |
| Disability Identification Tool Selection Guide | USAID | If you want to know which data collection tool is most appropriate for collecting data on children and youth with disabilities in your education activities, use this Tool Selection Guide. |
| Best Practices in Generating data on learners with disabilities | USAID | This short list of best practices will give you quick insight to start data collection on learners with disabilities. |
| Education indicators | OHCHR | Looking for indicators in line with article 24 of the UN Convention on the Rights of Persons with Disabilities? You will find them here. |
| Seen, Counted, Included: Using data to shed light on the well-being of children with disabilities | UNICEF | Looking for the most up to date information about children with disabilities? You will find all the details in this report that was published in 2021. |
| Guide for Inclusive practice for research with children with disability | Deakin University | Check this guide if you want to know how to involve children with disabilities in research and data collection. |
Some Practical Tips
- Consult organisations of persons with disabilities when developing the indicators, to better understand how effective the indicators will be and to contextualize them.
- Only formulate indicators that help the project make meaningful progress toward the objective of including persons with disabilities. And keep the “do no harm” principle in mind when selecting indicators.
- When formulating indicators it is also important to realise that persons with disabilities may face double discrimination. For example because of their gender, sexual orientation or age.
- It can be helpful to set a target percentage for including people with disabilities in activities, because it will be a continuous reminder for working towards inclusion throughout the programme. It also serves as a reference point for learning and evaluation on disability inclusion (did you reach the target? If yes, how? If not, why not?). Read more here on how to set such a target indicator.
- The data being collected can be sensitive in nature when stigma exists against persons with disabilities. Percentage of persons with disabilities that are included in programmes may not be the most appropriate or useful measure of inclusivity; instead, “proxy indicators” that look at inclusivity of the environment itself can be more effective for some project activities.
Step 4.
Prepare for data disaggregation
Prepare for data disaggregation
If you want to disaggregate your data on disability status you need to identify who has a disability and who does not have a disability. (See ‘key concepts’ for a definition of data disaggregation.) Identifying persons with disabilities in a community can be challenging.
Simply asking, “Do you have a disability?” is not appropriate or effective.
Because of stigma, people may not want to disclose that they have a disability, or they do not identify themselves as a person with a disability because they think of disability as something very severe, or because they consider their condition as normal for their (older) age.
Washington Group Questions
To identify persons with disabilities within your programmes and project areas you can use the so-called Washington Group Questions. The Washington Group on Disability Statistics developed different internationally recognized sets of questions in census and survey format. The aim is to globally support stronger and more robust disaggregate data collection and monitoring on the situation of persons with disabilities. The questions were designed to collect internationally comparable data and can be used to identify the majority of persons with disabilities. Moreover, they can easily be added to an existing survey or existing registration form, which will effectively reduce the cost and extra effort of collecting disability data. Although the method was originally developed for use in national censuses and large surveys, they also prove to be helpful for disaggregating data in development programmes.
The Washington Group Short-Set
The Washington Group Short-Set with six questions is most commonly used to disaggregate data at project level. The set of questions purposely avoids using the term ‘disability’ or ‘specific conditions’ as persons may be more reluctant to answer such questions due to stereotypes, stigma etc. The questions also do not require a yes or no answer but differ from: a. No – no difficulty b. Yes – some difficulty c. Yes – a lot of difficulty d. Cannot do at all.
Limitations
While the Washington Group Short Set identifies a majority of people with disabilities, please note that it has limitations:
- It misses many people with psychosocial disabilities. That is why the ‘WG-SS Enhanced’ and the ‘WG-ES’ have questions on anxiety and depression.
- Also, the short set does not work for children below the age of 5 and it misses a lot of children with developmental disabilities. That is why the Washington Group and UNICEF created the Child Functioning Module.
In the toolbox to the right you will find more information on the other sets that are available.
| Name & Link | Organisation | Description |
|---|---|---|
| Why is it important to identify the population with disabilities? | Center for Inclusive Policy | Watch this six minute video to find out how to identify persons with disabilities and how to disaggregate your data for disability. |
| DFID’s guide to disaggregating programme data by disability | DFID | Looking for a quick intro on using the Washington Group Questions? This guide will help you. |
| WG Short Set on Functioning (WG-SS) | The Washington Group on Disability Statistics | Use the Short Set of Questions of the Washington Group to identify the majority of persons with disabilities that may encounter participation restrictions and / or possible barriers within your project response. |
| Name & Link | Organisation | Description |
|---|---|---|
| WG Short Set on Functioning – Enhanced (WG-SS Enhanced) | The Washington Group on Disability Statistics | If you want to collect more specific information on the body functioning or psychological functioning of a person, use this Enhanced Set of Questions. The enhanced set has 12 questions (the six questions of the Short Set + six extra questions). |
| WG Extended Set on Functioning (WG-ES) | The Washington Group on Disability Statistics | If a more in-depth analysis is required you can also use the Washington Group’s Extended Set on Functioning. |
| Name & Link | Organisation | Description |
|---|---|---|
| The Washington Group on Disability Statistics: Interviewer Guidelines | The Washington Group on Disability Statistics | Want to train data collectors on the use of the Washington Group questions? This guideline for interviewers will be a great resource. |
| Data Collection Training Videos for your Team by UNICEF | UNICEF | Looking for training about disability inclusive data collection? These practical videos from UNICEF are a good starting point. |
| Translation of the WG Question Sets Part 1: The importance of good translation Translation of the Washington Group Question Sets Part 2: Best Practices for Translation | Center for Inclusive Policy | Want to translate the Washington Group Questions? This video explains how to do this in a good way. |
| E-learning module: Collecting Data on Disability Inclusion | World Bank Open Learning Campus | In this self-paced eLearning course you learn who persons with disabilities are, how to measure different types of disabilities using international standards, how to collect data for different demographics and how to analyse the data. |
Some Practical Tips
- Add the six questions of the Washington Group Short Set to the existing data collection tools and systems of your programmes/organisation. This will enable you to disaggregate your project data by disability.
- To collect disaggregated data, the survey questions need to be asked to all programme participants, not only to persons with (visible) disabilities.
- Train your staff on how to use and implement the Washington Group sets of questions within existing surveys / registration forms. It is important that the data-collectors know how to ask the questions and fill in the scores.
- If the questions need to be translated to a local language, follow the instructions of the Washington Group on how to do this.
- Use the collected data to analyse how many persons with disabilities are reached with your programmes and whether they are benefitting equally.
- Be aware that the Washington Group Questions are not meant to identify what type of disability a person has. You will need to use additional tools if you want to identify type of disability.
Step 5.
Collect baseline data on disability and inclusion
Collect baseline data on disability and inclusion
Data disaggregation alone is not enough. In order to get a full picture of inclusion, you will also need to collect data on participation, environmental and attitudinal barriers and quality of living. But what data do you actually need to collect in order to formulate, design and monitor a disability inclusive project?
| Name & Link | Organisation | Description |
|---|---|---|
| What is the prevalence of disability? | Center for Inclusive Policy | This short video helps you understand prevalence rates of disability and how to collect such data. |
| Practice note: Collecting and using data on disability to inform inclusive development | Plan international, CBM Australia, Nossal Institute | Want to get a quick overview of available methods an tools for collecting data to support disability inclusion and when to use them? On page 30 and 31 you will find a table with all the details. |
| Participation scale | NLR | Looking for a tool to measure social participation of persons with disabilities? The Participation scale (P-scale) will help you to ask the right questions. |
| Roads to inclusion | Light for the World/Enablement | Do you want to measure inclusion of persons with disabilities at community level? You can easily get started with this tool. |
| Rapid Assessment of Disability (RAD) Toolkit | Nossal Institute for global Health | The RAD toolkit contains validated questionnaires to collect information regarding disability prevalence and the wellbeing and needs of persons with disabilities, and guidelines for their use. |
| Accessibility standards and audit pack | Sight Savers | Want to do an in-depth accessibility audit? This tool pack is designed to assess health care facilities, but can also be used as an inspiration to assess other types of programmes and services. |
| Model Disability Survey | WHO | If you want to dig deeper and identify unmet needs, barriers and inequalities faced by people who experience different levels of disability. This model provides more detailed questions to ask to persons with disabilities during surveys. |
| Name & Link | Organisation | Description |
|---|---|---|
| World report on disability 2011 | WHO | Looking for reliable data about persons with disabilities? This report contains a wealth of data. A new report is underway. |
| United Nations Disability Statistics | UN Statistics Division | Looking for national disability statistics? This repository brings all the statistic together. You can also search per topic. |
| Ask Source – The knowledge-sharing platform on disability and inclusion: | Ask Source | This database full of research reports, manuals and tools is a great place to start your search for disability inclusive data. You can search per topic, but also per country. |
| Disability Data Advocacy Toolkit | CBM, IDA, Stakeholder Group of Persons with Disabilities for Sustainable Development | On page 20-30 you will find practical tips how to access existing data and how to deal if there are data gaps. |
| UN Treaty Body Database | OHCHR | Looking for a report about the progress on the implementation of the UN Convention on the Rights of Persons with Disabilities in a specific country? In this database you will find all the reports. |
Some Practical Tips
- A logical first step is to find out what data are already available about persons with disabilities in the sector, country and region that you are working in. This will help you to understand the prevalence of disability and the barriers that children and adults with different types of disability are facing in relation to the specific sector you are working in.
- If you are looking for statistics about the number of people with disabilities in a specific country or region, do not only look at the official national statistics, but also ask organisations of persons with disabilities and disability specific NGOs for their data. They can help you to access the available information.
- Don’t be surprised if disability statistics may look contradictory. It is often the result of the definition of disability and the data collection method that was used. So always look critically at what definition of disability is used and use data from different sources. That will give you the best impression.
- You will also want to assess the specific type of barriers persons with disabilities face in accessing the services/programmes of your organisation. Involve persons with disabilities (and their caretakers) in the identification of the barriers. For example through using participatory methods like focus group discussions, storytelling, photo voice etc.
- Doing an accessibility audit of project locations will help you to find out what needs to be done to create an accessible environment.
- You can also conduct disability specific surveys and use other additional data collection methods to get a more in-depth picture of the experiences and perspectives of persons with disabilities. We have listed some practical tools below.
Step 6.
Monitor inclusion and equal participation of persons with disabilities and adjust implementation where needed
Monitor inclusion and equal participation of persons with disabilities and adjust implementation where needed
The inclusion of persons with disabilities needs to be carefully monitored during implementation of the programme. Often in the course of a project new barriers come to light or the inclusion strategies are not yet completely implemented, or do not have the anticipated effect.
Checklist
The following questions can help you ask the right questions during implementation:
- How do people with a disability perform and participate in comparison to participants without disabilities? If there is a difference, why is there a difference?
- Is budget for disability inclusion activities/reasonable accommodation used?
- How does the partnership/collaboration with organisations of persons with disabilities, government and disability-specific organizations develop?
- Is the staff aware of disability issues and do they understand the inclusion process?
- Are the communities aware about disability rights?
- Is the position of people with a disability at household level changing? In what way?
- Are the barriers at project level identified and removed?
- Are all activities accessible for persons with disabilities?
- Is the information in the project accessible?
| Name & Link | Organisation | Description |
|---|---|---|
| Participatory monitoring tools in “Towards Inclusion” | Mission East, ICCO, Light for the World | Between the pages 90 – 107 you will find a set of participatory monitoring tools to measure inclusion. |
Some Practical Tips
- Regularly check progress on the indicators and involve organisations of persons with disabilities in the monitoring.
- If there are still barriers that need to be removed: involve persons with disabilities in the development of corrective measures. They know best what works for them.
- Use participatory methods to measure participation and inclusion, for example photo voice, case stories, or the most significant change tool.
Step 7.
Evaluate disability inclusion and use the lessons learned for future programming, policy development and improvement of the monitoring mechanisms.
Evaluate disability inclusion and use the lessons learned for future programming, policy development and improvement of the monitoring mechanisms
At the end of the programme the inclusion of persons with disabilities should be evaluated. Did persons with disabilities participate? How did they benefit from the programme? What impact did the programme have on their everyday life?
Since inclusion of persons with disabilities is still a new topic for many development actors, it is important to carefully evaluate the inclusion of persons with disabilities in programmes and also document the lessons learned. These lessons learned will help to improve future programmes and inform organizational policies.
It is also important to use the experience to further improve the monitoring mechanism of your organisation. Many organisations start with disability inclusive monitoring in one programme and use these experiences to make their whole monitoring and evaluation mechanism disability inclusive.
| Name & Link | Organisation | Description |
|---|---|---|
| Participatory Inclusion Evaluation Toolkit | Enablement | This toolkit offers a complete step-by-step approach to evaluate disability inclusive development programmes in a participatory manner. From forming the evaluation team up to validating and presenting the outcomes. |
| Towards Inclusion: Inclusion Evaluation Checklist | Light for the World/ Mission East/ICCO | Are you looking for inspiration what questions to ask about disability and inclusion in a terms of reference? Use this checklist! |
| Name & Link | Organisation | Description |
|---|---|---|
| Disability Inclusion Score Card | SeeYou Foundation | Want to assess your organisation’s performance in the area of disability inclusive monitoring? Domain 2 will help you ask the right questions. |
| Resource Book on Disability Inclusion | Light for the World | Looking for more background information, tools, checklists and practical tips about disability inclusive monitoring and evaluation and how to make your organisational systems and policies more inclusive: check this extensive resource book. |
Some Practical Tips
- Involve persons with disabilities and their organizations in the evaluation process, not only as informants, but also as part of the evaluation team or as data collectors.
- Select an evaluator/evaluation team with expertise on disability inclusion and strive for representation of persons with disabilities in the team.
- Include specific questions on disability and inclusion in the evaluation.
- Make sure the evaluation tools and processes are disability inclusive: the evaluation team and data collectors need to have practical skills on disability inclusive communication.
- Publish the evaluation report in an accessible format and share it widely, also with organisations of persons with disabilities.
- Using the Washington Group Questions in all your data collection processes will be an important step in making the monitoring mechanisms inclusive.
- If you want to improve the monitoring mechanisms of your organisation, you can assess what your organisation is already doing with regards to disability inclusive data collection and monitoring with the Disability Inclusion Score Card (domain 2). Based on the outcomes you can make a plan for improvement.
- Audit the data tools of your donors and, if needed, sit down together and suggest adjustments that support consistent disability indicators that contribute to your project area or country.
- In case your organization lobbies and advocates towards government institutions, you could use the opportunity to advocate for a consistent approach and inter-agency collaboration towards data collection on cross-cutting issues persons with disabilities face.
About
This quick guide has been developed by the Dutch Coalition on Disability and Development in collaboration with: Digital Power Datahub, Dorcas, Enablement, Into Inclusion, Liliane Foundation, NLR, Partos, Results in Health, SeeYou Foundation, ZOA, The Leprosy Mission, We Are Able!, Judith Baart, Daniel Mont.
Special thanks to Gerlinde Schmidt for the initial research and writing and to Paulien Bruijn for guiding the process and to Sanne Lukkien for the design.
Development of this guide was sponsored by DCDD Participants and the WeAreAble! Consortium:
Contact Us
Do you have questions or suggestions, please fill in the contact form or reach out to dcdd@dcdd.nl :