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To better understand the contexts and needs of persons with disabilities, better data is required. Today, sources of disability data remain scarce. Many countries do not produce official data disaggregated by disability, for instance in their censuses, household surveys or health surveys. In cases where national disability data are available, they are often not analysed, considered or made publicly available.2
In addition, most available datasets offer limited information about the lived experiences of persons with disabilities, such as their ability to access services, or the quality and availability of those services. Data collected through different sources are often not standardized, resulting in fragmented, inaccurate insights that limit the development of evidence-based inclusive policies and programmes.
Citizen-generated data methodologies can gather valuable insights about persons with disabilities. However, organizations of persons with disabilities (OPDs) are often left out of the process, from defining the research questions in the early stage, to designing methodologies or collecting the data.
When OPDs lead the data collection process, the outcomes have shown to be significantly different: their firsthand understanding of the barriers faced by persons with disabilities produces data grounded in lived experience and more likely to address critical gaps, influence policy change and give communities ownership over their data.
An example of OPD-led citizen data collection that influenced policy change comes from the Las Piñas Persons with Disability Federation, Inc., a cross-disability federation representing persons with physical, sensory, psychosocial and intellectual disabilities, made up of 16,000 members from barangays (districts) across Las Piñas, Philippines.
In 2013, the Las Piñas Persons with Disability Federation, Inc. initiated a disability profiling exercise across 20 of the city’s barangays. From 2021 to 2022, the profiling was expanded and updated thanks to funding from CBM Global Disability Inclusion, an international disability development and humanitarian organization.
OPDs were central to the profiling process, participating across the full data value chain from design to dissemination. Data were collected in all 20 barangays from February to June 2022, using a mixed-methods approach that included interviews, in-person surveys, an online survey, house-to-house visits and satellite registration, which enabled those who could not attend data collection activities in person to be registered at designated points in their barangay. In 2024, the profiling exercise was replicated in the city of Calabanga, Philippines.
The disability profiling exercise produced the first comprehensive disability dataset in Las Piñas, covering 5,877 persons with disabilities across the 20 districts. The data led to concrete policy and programmatic changes in three areas.
First, data on mobility barriers led to the creation of an accessible transport service for wheelchair users, which was subsequently funded and adopted into the city’s Disaster Risk Reduction and Management Plan.
Second, employment data revealed that over one-third of persons with disabilities of working age were unemployed. This prompted the Philippine Government’s Department of Labor and Employment to allocate 400 short-term paid work placements under the Tulong Panghanapbuhay sa Ating Disadvantaged/Displaced Workers (TUPAD) emergency employment programme. This is a cash-for-work scheme that persons with disabilities had previously found difficult to access.
Third, data on children with disabilities contributed to the development of an evidence-based enrichment programme that created a pathway into mainstream education.
This use case demonstrates how data can translate into tangible improvement in the lives of persons with disabilities, contributing to SDG 10 (Reduced inequalities) and SDG 17 (Partnerships for the goals).
persons globally live with a disability, representing about 16 percent of the world's population.
Globally, an estimated 1.3 billion persons with disabilities – around 16 percent of the world’s population – face systemic barriers to education, employment, health services and public life.3 As a result, persons with disabilities across the world are more likely to experience multidimensional poverty, and in some cases, this likelihood more than doubles.4 Much of this stems from exclusion: when persons with disabilities cannot access the same opportunities and services as their peers, poverty deepens and persists across generations.
The absence of timely and reliable data is a critical driver of this exclusion. Data on persons with disabilities are not always captured, especially in national surveys. Funding is not always allocated for disability data collection. Where this type of data exists, it tends to not reflect the lived experiences of persons with disabilities, such as whether certain services are accessible or available to them. Moreover, as this data is not harmonized across agencies or surveys, actionable insights cannot be generated to support inclusive, evidence-based policies and programmes.
This gap is particularly visible when monitoring countries' progress towards the Sustainable Development Goals (SDG). In the SDG Global Database, only seven indicators have any disability data recorded, and just three have data reported by more than one country.5 This is even though the Convention on the Rights of Persons with Disabilities (CRPD) and the 2030 Agenda for Sustainable Development mandate the collection and disaggregation of disability data, with a growing emphasis on non-traditional sources such as citizen-generated data.6 Persons with disabilities often face multidimensional discrimination, based on their disability, gender, age and socioeconomic status. One way to tackle this is to prioritize the collection, analysis and use of disaggregated data across all relevant sectors, applying an intersectional lens. Including OPDs in the data value chain is highly beneficial, particularly in the initial planning stages; in practice, their involvement comes in the latter stages, if at all. Putting OPDs at the centre of data processes enables communities to retain ownership of their data and ensures that the data are accessible, protected, relevant and reflect reality.
In Las Piñas, a city of approximately 606,000 people in Metro Manila, Philippines, this data gap had direct consequences. Without a reliable local picture of the persons with disabilities population (such as where they live and what barriers they face), the city's policymakers, service providers and OPDs had to operate without the evidence needed to design programmes or make the case for resources. In Las Piñas, OPDs were often engaged in advocacy efforts, but lacked the data to substantiate their claims or hold duty-bearers to account.
Recognizing that without reliable local data the needs of persons with disabilities would remain invisible to policymakers, the Las Piñas Persons with Disability Federation, Inc. drew on its network of 16,000 members across 20 barangays to generate that data.
A critical first step was to organize groups of persons with disabilities in every barangay before data collection began. Without an active OPD structure in each area, consistent reach across all 20 barangays would not have been feasible.
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This picture was taken during the satellite registration in barangay Talon Cuatro in Las Piñas, where persons with disabilities residing in the area were invited for data profiling in the nearby village clubhouse.
A mixed-methods approach was used to maximize reach across the city’s diverse communities: house-to-house interviews, in-person surveys, satellite (remote) registration and online surveys. These different formats enabled persons with disabilities to participate, even if they could not attend community events or did not have reliable internet access.
Students from De La Salle University (Manila) co-created and administered the online surveys, with results analysed under academic supervision. The online survey component was approved by the De La Salle University Ethics Review Board. Participating students received disability awareness and sensitivity training before engaging in the project, covering disability-inclusive practices, appropriate communication and terminology, different types of disabilities, and the rights of persons with disabilities. Assistance desk coordinators in each barangay also carried out surveys.
Four cluster coordinators from the Federation oversaw specific barangays. Barangay chapter officers were trained as enumerators and collected data. Volunteers from each barangay reported findings to cluster coordinators, who shared findings with the Federation. Enumerator training included disability sensitivity awareness to ensure accurate and respectful data collection. Quality was monitored throughout via an initial assessment, midterm evaluation and final evaluation.
The profiling process used KoBoToolbox as the online survey tool, which streamlined data collection and reduced the time needed for validation and encoding compared to pen and paper methods. KoBoToolbox is a free, open-source tool developed by Harvard Humanitarian Initiative that allows users to create surveys, collect data via mobile devices or web browsers, and visualize real-time insights even in remote areas without internet access. A stakeholder engagement process ran in parallel with data collection to secure buy-in from local government and community partners. Following this profiling exercise, the data profile was formally adopted by the Persons with Disability Affairs Office, and a workshop was held on the responsible use of data gathered by and for persons with disabilities.
Data collected via KoBoToolbox were transmitted over encrypted connected and stored on password-protected servers hosted by Amazon Web Services (AWS). KoBoToolbox provides GDPR-compliant data processing, disk-level encryption at rest, and optional project-level encryption. The Federation maintained sole administrative access to the survey data, and no data were shared with KoBoToolbox staff.
The partnership with De La Salle University was central to the online data collection effort. University students co-created and converted the data profiling questionnaire into a digital survey format, conducted online interviews, and statistically interpreted the results under the supervision of Dr. Mitzie Conchada, Professor at the School of Economics at De La Salle University.
At the barangay level, partnerships with the Association of Barangay Captains (the ABC league of elected leaders across the city's 20 barangays) supported dissemination and data gathering, while barangay Persons with Disability chapter organizations collaborated with the cluster coordinators to streamline communication and responses. While the Federation did not partner with the national statistical office as part of the original arrangements, the profiling results were incorporated into the Las Piñas City situational analysis and city profile. All data shared with partners were de-identified and aggregated at the barangay level, shared only through a formal request to the Federation stating the purpose of the data use.
All data are held by the Federation and can only be accessed by submitting an official request indicating the intended purpose. Personal identifying information including names, address and contact information is excluded from the dataset. All participants provided informed consent prior to interviews and were free to decline participation or withdraw at any point. Consent was designed to ensure that individuals could choose which personal information to share. This was particularly important for persons living with HIV or psychosocial disabilities, who may face heightened stigma around disclosure.
For online surveys, participants were informed that their data would be used to develop programmes, projects, or activities for persons with disabilities, and gave their consent on that basis. Video and photographic documentation were subject to additional access controls: participants reviewed and approved the use of their images in advance, and only the Federation or its authorized documentation team could access or use this material. Use was restricted to the Federation's narrative reports and official communications channels.
The data collection and processing activities fell within the scope of the Philippines’ Data Privacy Act of 2012 (Republic Act No. 10173), which governs the processing of sensitive personal information, including health data and disability status. Under this law, the Federation acts as the personal information controller and is responsible for ensuring that data are collected with informed consent, used only for the stated purposes, and protected against unauthorized access or disclosure. The Federation’s practice of excluding personally identifiable information from shared datasets and restricting access through formal requests is consistent with the Act’s requirements for proportionality and data minimization.
The results of the profiling exercise and recommendations were disseminated to stakeholders via a printed manual. Barangay chapter officers were also able to access data through the Federation, which contains a digital copy of the data profiles for all 20 barangays. These data profiles have been instrumental in developing disability-inclusive activities, projects and programmes across the city.
The profiling exercise identified 7,221 persons with disabilities across the city and digitally registered 5,877 persons in the official government system. All 20 villages in Las Piñas now have disaggregated data by disability with intersectional aspects, including the number of persons with disabilities per barangay, disability type, age, gender, cause of disability, educational attainment, employment status, disability ID status and voting status.
The difference between the 7,221 persons identified and the 5,877 digitally registered reflects cases where individuals were located through outreach but could not be fully profiled, due to incomplete information, inability to participate in follow-up interviews, voluntary withdrawal from the process, or project administrative deadlines. Records for individuals who were not fully profiled were not retained in the final dataset.
The project mobilized 131 OPDs and community volunteers. Beyond the data generated, the profiling catalysed an important organizational change. Previously, barangay-level OPDs had only engaged with the city federation, but following the profiling exercise, barangay-level OPDs extended their engagement to barangay development councils, the local peace and justice system, and health councils. More than half of the villages have established offices for persons with disabilities, and all 20 villages have a Persons with Disabilities Assistance Desk with a salaried coordinator who is also a person with a disability or a guardian.
The data can also be migrated to the Philippines Registry for Persons with Disabilities, making it easier for OPDs to access insurance services with PhilHealth, the Philippine Health Insurance Corporation. Any migration of profiling data to the Philippines Registry for Persons with Disabilities would require verification that the original informed consent provided by participants covers this secondary use, or that fresh consent is obtained, in line with the Data Privacy Act of 2012.
The Las Piñas profiling demonstrates that locally generated, OPD-led data can fast-track progress from evidence to action. The results were shared with local government officials, policymakers and government agencies, informing not only policy decisions but also budgeting and programme design. By highlighting the scale and specificity of need to decision-makers who previously lacked the evidence to act, the data catalysed concrete policy and programmatic changes across three areas.
Data on mobility barriers among wheelchair users led to the creation of A-TraMS, an accessible ergonomic van converted from a commercial vehicle, in collaboration with barangay Pamplona Uno. Funded by the Pinnovation Academy in 2022, A-TraMS was designed to address the transport needs of persons with disabilities during emergencies and disasters. The model was subsequently adopted by the Las Piñas local government unit and incorporated into the city's Disaster Risk Reduction and Management Plan. By 2024, a second A-TraMS had been provided to the Federation, and the model is being replicated by other barangays across the city.
Data on employment revealed that more than one-third of persons with disabilities of employable age (18–59 years) were unemployed. These findings were presented at a data launch – a convening activity that marked the start of an awareness and advocacy campaign at federation level. In response, the Department of Labor and Employment (DOLE Muntaparlas cluster) and the Public Employment Services Office designated 400 paid work placements for unemployed persons with disabilities, under the TUPAD programme. This scheme provides paid work placements of four hours a day, 10–14 days a month, at minimum wage, for up to two months a year. Spaces on the scheme can be requested twice a year, to serve different participants. Work placements included tidying parks, schools and urban green spaces. Previously, persons with disabilities had difficulty accessing the programme.
When beneficiaries access short-term employment (10–30 days) through the TUPAD scheme, they are subsequently offered voluntary skills training through the Technical Education and Skills Development Authority (TESDA) to support their transition into longer-term employment. The allocation of 400 placements to persons with disabilities represented a significant shift in programme accessibility, despite the temporary nature of the employment.
Data on children with disabilities contributed to the amendment of the Las Piñas Children's Code to explicitly include children with disabilities. This was achieved through a community-based enrichment programme developed in partnership with Asmae, an NGO working for children's rights that prepares children with disabilities to transition from disability centres into mainstream schools. The programme trained daycare teachers to identify different types of disabilities and to enhance effective delivery of classroom instruction for children with disabilities. This also prompted accessibility audits of daycare centres. In consultation with parents, guardians, facilitators and a technical mentor, the Federation developed an inclusive learning module for children with disabilities. Of the 50 children involved in the pilot phase of this module, 37 were accepted into mainstream schools.
Data collection involving children with disabilities was conducted with the informed consent of their parents or legal guardians. Additional safeguards were applied to children’s data, including restricted access and the exclusion of individually identifiable information from any publicly disseminated materials.
Across these three examples, the data also enabled the Federation to establish community-based stroke support groups, identify beneficiaries of government services, and launch a health and wellness awareness campaign within the Las Piñas health and nutrition offices. In each case, the data made needs visible, and visibility sparked action.
In 2024, the Las Piñas profiling model was replicated in the city of Calabanga, demonstrating that an OPD-led data collection approach is transferable. The Las Piñas experience shows that when OPDs are placed at the centre of data processes, the results are not only more relevant to the communities they represent but are also more likely to translate into evidence-based policy change.
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While the Las Piñas case has yielded significant policy impact and can help to ensure a safe and inclusive digital future for all, including persons with disabilities, some improvements are still needed to yield long-term impact:
Strengthen data capacity for national statistical offices, including providing enumerator training. Disability awareness provided by experts in the field can lead to more accurate data on prevalence.
