Introduction

Note: The present standards focus on the interoperability requirements between Disability Registry (DR) and Social Protection MIS. They present examples of case use on the type of information that may be required by SP MIS from DR and vice versa to enable more inclusive social protection and optimize support for persons with disabilities that are seeking and have been granted official disability status in accordance with national laws and regulations. The information available in DR varies widely between countries, and the standards are based on what has been observed in a diversity of countries so as to enable practical interoperability with SP MIS in different contexts. The standards do not cover how to build Disability registry or interoperability with other systems such as healthcare MIS.

Disability Registry (DR) sometimes called Disability MIS, consolidates data on the individuals that have applied for and have been granted the official disability status or disability certification. Some registries may also contain information about individuals who have applied and been assessed but have not been deemed eligible to be granted the disability status. The type of information recorded in the DR varies widely between countries depending on the criteria related to disability certification, the information collected during the disability assessment, and the decision about which information will be recorded in the DR. The UN Committee on the Rights of Persons with Disabilities has consistently recommended that countries consider the barriers and support requirements of the individual in the disability assessment, and not only the impairments.

The goal of a DR is to provide useful information about individuals holder of disability status to facilitate access to relevant schemes and services available and enhance case management. The DR can also support central and local government in planning and resourcing for needed disability support benefits and services.

DR is distinct from social registries. While a social registry will hold a list of all people and/or households registered (and hence potentially eligible to receive benefits) a DR will only hold data on individuals that have applied for and been granted an official disability status.

A DR has a number of objectives, including but not limited to the following:

  • Social Assistance: DR enable better identification of children and adults with disabilities seeking disability related support allowing government and authorized organizations to provide targeted services such as financial aid, care and support services and facilitate access to health care, rehabilitation, assistive technology, education, among others.

  • Personalized support Plans: With better data on the type of functional difficulties, support requirement and barriers, social worker or case manager can develop with the person (and also with their families in case of children and adult with very high support needs) personalized care and support plan to address their specific needs.

  • Informed Decision-Making: In conjunction with other statistical data, DR can provide more granular information that help policy makers understand better the scope, extent and level related difficulties and support requirements of the diversity of persons with disabilities in their population.

  • Benchmarking and Evaluation: DR provide a basis for benchmarking the effectiveness of disability programs and services over time. It can also help assess the extent to which existing mainstream social protection programs include persons with disabilities.

  • Optimized Service Delivery: With detailed information on the situation and support requirement of individuals with disabilities, resources can be allocated more efficiently, ensuring that those in need receive timely and appropriate support.

  • Cost-Effectiveness: DR can help optimize the use of public resources by improving the accuracy of targeting and prioritization of support to those who need it most first, facilitating access to available schemes and services, and preventing undue duplication in support.

  • Rights Enforcement: DR helps ensure that individuals with disabilities are identified officially, can access their legal rights and entitlements, as well as facilitate, but not being required for, anti-discrimination protection and provision of reasonable accommodation.

  • Monitoring and Accountability: DR aggregates and synthesizes data across various social protection programs.

  • Disaster preparedness and response: DR can help identifying people who would be in need of accessible warning information and communication as well as specific support for evacuation and shelter. It enables prompt and targeted expansion of cash and in-kind support in response to crisis.

Interoperability between SP-System and DR

DRs can assist with planning, coordination and monitoring across the entire social protection system. The DR can be both an analytical and operational tool. It can also help to coordinate services, streamline enrolment processes for persons with disabilities, improve service delivery, and enhance the overall efficiency of social protection programs. It can also help advance planning for supporting people with disabilities in emergency situations, for example for evacuation plans.

Interoperability between a Social Protection Systems (SP-Systems) and a Disability Registry (DR) is crucial for creating an integrated and efficient social protection system. By enabling seamless data exchange and communication between these systems, interoperability ensures that information about persons with disabilities is accurately captured, shared, and utilized across various services and programs. This connection can help to improve accessibility of benefits and services for persons with disabilities, including both mainstream and disability-specific benefits and services, personalized service delivery, and comprehensive monitoring of the social protection landscape. Additionally, interoperability enhances the ability to track the impact of social interventions and avoid duplication of services, fostering a more inclusive and responsive social protection system.

Interoperability between SP-MIS and DR requires a multi-step approach

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