Introduction
More than 2.5 billion people around the world need at least one assistive product to support their full and effective participation, out of them, 90% do not have access to assistive technology. While access to AT is limited globally, the unmet AT need is disproportionately high in Low and Middle Income Countries (LMIC), where only 5–15% of people who require AT access have access to AT. Lack of human-centered AT policies is largely responsible for these huge unmet needs across the world. Integrating human-centered AT policies into the legal frameworks of the countries is a prerequisite for ensuring AT for all potential users. This article focuses on the relevance of meaningful consultation with and participation of AT users, including organizations of persons with disabilities, to AT policy making and implementation processes.
Obligation to consult AT users and OPDs
The Universal Declaration of Human Rights (UDHR) recognizes people's right to participate in the government of his or her country directly or through chosen representatives. Article 4.3 of the CRPD reiterated the legal obligation of States Parties to closely consult with persons with disabilities, including children with disabilities and their representative organizations in the development and implementation of laws and policies. General Comment No.7 issued by the CRPD Committee further explained the obligations of States Parties to consult OPDs meaningfully, the process of how to consult meaningfully, and how to meaningfully engage OPDs in the monitoring processes. IDA-GDI Hub AT fellows observed in their countries that public policies are developed from a technical perspective and bureaucratic processes, and do not include consultations with beneficiaries and target groups of the policy, which in many cases causes policies to be disconnected from the life experience of people and does not identify their priority needs.
People who benefit from assistive technology should be at the center of an assistive technology policy. The assistive technology policy-making process must respond to the people's needs and demands and the realities of that country. The meaningful consultation involving AT users and OPDs creates the opportunity to address ground realities and challenges by exploring diverse experiences from the local leadership and stakeholders. In addition, users and potential users of AT are the best resources to assess both new and current data and research.
Benefits of consultation
Consultation of persons with disabilities and their representative organizations (OPDs) is not only a right, but an obligation. OPD consultation is considered as both a process and an outcome. It brings multiple benefits for relevance, quality, usability, impact, and sustainability of policies. As said earlier, meaningful consultation is a must for identifying user needs and working out the best solution to address the actual needs across the diversity of persons with disabilities. Consultation offers ample opportunities to explore lived experiences from the users, which ultimately helps to find expedient solutions. If there is no consultation with the users, the policies and innovations may not be usable by the end beneficiaries. Consultation is a part of the localization agenda which recognizes local resources and empowers local actors to find a solution which is well fit to the specific context.
Practicing parameters of consultation
According to the IDA Global Survey on Participation of Organizations of Persons with Disabilities in Development Programs and Policies [2019], OPDs are more engaged in disability-specific issues, and some disability constituencies (persons with visual, physical and hearing impairments) are more consulted than other constancies. The 2nd IDA Global Survey on OPD participation reconfirmed that OPD consultation is increased, but lots of barriers exist to make the consultation meaningful. Consultation should be meaningful, and this is not for merely ticking a box!
The UN Secretary General’s Office published the UNDIS Guidelines on Consulting Persons with Disabilities that highlights eight key considerations for meaningful consultation with persons with disabilities and OPDs, which is a good starting point for consideration of how to approach this issue. If we link this to AT, we can arrive at these following points:
- OPDs, and their members who are AT Users or potential AT Users, should be consulted through a variety of appropriate, context specific methodologies.
- OPDs should be engaged as partners in the planning, design and implementation of consultations.
- OPDs should be adequately supported for their participation, including through timely information, capacity building and funding. Necessary information should be disseminated prior to consultation so that the OPDs can provide informed opinions on the draft policies.
- Consultations should aim to engage with the diversity of the population of persons with disabilities and consider intersectionality. If all diverse groups are not consulted, crucial experiences of underrepresented groups of persons with disabilities, including those experiencing intersectional forms of discrimination, would be left out.
- Consultations should be accessible and reasonable accommodation needs to be provided. For example: captioning, sign language Interpretation, accessible documents, easy-to-read versions may be organized or provided.
- Consultations should be safe, empowering, respectful and not tokenistic.
- Consultations should be based on transparency, meaningful dialogue, and good faith.
- Knowledge and learning generated by consultations should be considered. The outcome of consultation should be shared with participants for their review and information.
