Why Collecting Disability Data is Vital for Inclusive Policies and Sustainable Development
Collecting disability data is crucial for the development of inclusive policies and sustainable development. Disability data provides insights into the size, status, and inequalities associated with disabilities, ensuring that programs reach both people with and without disabilities. However, access to quality disability data remains scarce, which hampers efforts to address the issues faced by people with disabilities and develop evidence-based policies.
Approximately 15% of the global population has some form of disability, making it the largest minority group that continues to grow. Disabilities can affect anyone at any time due to accidents, illnesses, old age, or disasters. Given the diversity of disabilities and the various barriers that affect access to services, it is essential to collect data that takes into account different impairments and challenges.
Data on disparities in health, education, and employment among people with disabilities is necessary for improving service provision. Article 31 of the Convention on the Rights of Persons with Disabilities (CRPD) emphasizes the need for disability statistics and data collection to support policy development and implementation. Confidentiality and respect for privacy are crucial when collecting and disseminating disability data to ensure that individuals with disabilities are not left behind in programs and interventions.
Disability data plays a vital role in identifying the inequalities faced by people with disabilities and the patterns and magnitude of these disparities. It is instrumental in designing inclusive policies and program interventions. The 2030 agenda for sustainable development recognizes the importance of disaggregating data by disability, along with other factors such as gender, age, income, and ethnicity, to leave no one behind.
However, collecting disability data poses challenges as different countries use various tools and methodologies. Some commonly used tools include the World Health Organization’s Functioning and Disability Disaggregation (FDD11) tool and the Washington Group Short Set of Questions (WGSSQ). While these tools capture valuable data, they also have limitations, such as not directly addressing mental health functioning or providing accurate data for children beyond the age of five.
Historically, the collection of comparable disability data has been inconsistent due to limited resources and lack of political will. Additionally, some people with disabilities may choose not to participate in surveys or disclose their health information. Inaccessible digital information and services further hinder the participation of people with disabilities in data collection efforts.
To address these challenges, there is a need to invest resources in collecting disability disaggregated data and building the capacity of stakeholders to support such efforts. National data systems should prioritize disability inclusion, and public education plays a crucial role in ensuring that society understands and utilizes disability data for program design.
Involving people with disabilities and their organizations is essential for promoting disability inclusion and gathering accurate data. Research and data collection methods should be adapted to include different types of impairments and modes of communication. Other intersecting identities, such as level of support required, age, income level, and geographic location, should not be overlooked.
In conclusion, collecting disability data is vital for monitoring the implementation of the Sustainable Development Goals (SDGs) and ensuring compliance with the CRPD. It provides a broader understanding of the challenges faced by people with disabilities and informs evidence-based advocacy and inclusive initiatives. By collecting and utilizing disability data effectively, stakeholders can strengthen interventions aimed at providing assistive devices, reasonable accommodations, and targeted services to improve the lives of people with disabilities.
