B. Frequently Asked Questions

Q17. How can this guide be used as a tool for advocacy and change by persons with disabilities and their organizations?

A17. This guide can be an effective tool for advocacy and change with regard to policies and practices relating to the promotion of the right to live independently, provided that it is used in organized campaigns with clear and realistic objectives and innovative tactics. To this end, organizations of persons with disabilities and other relevant civil society organizations can take some of the following steps:

1. Establish a consortium, collective or group that is united by a shared vision. This requires one or more organizations to encourage others, especially organizations of persons with disabilities and their families, to come together and form a group or consortium. The group or consortium does not necessarily have to be official or registered, as it is sufficient for its members to be united by a common cause, namely, the fight against institutionalism and the promotion of independent living. The members must then determine the nature and composition of their group and agree on a shared vision for their activities. This requires them to take the following steps:
   • Select representatives of persons with disabilities and their organizations who are strong, effective and show leadership qualities. They should be diverse in terms of disability and gender and bring together complementary sets of skills and knowledge.
   • Embrace and promote self-advocacy[1] as part of an overall advocacy campaign, so that persons with disabilities who have themselves been victims and survivors of institutionalization can express their experiences and demands. This requires the provision of specialized knowledge and technical support in the fields of communication, human rights culture, understandings of disability based on the social and human rights models, and public speaking skills, especially in storytelling, which is an effective way to send an impactful, powerful message. An individual narrates his or her experience using a template that starts with his or her personal story ("My Story"), then links it to the group's cause ("Our Story") and then to the story behind the joint campaign and its demands ("Our Story Now"), explaining the positive impact expected if the demands of the campaign are met ("The Campaign's Story Now") and the consequences of them not being met, otherwise known as "Heaven and Hell", all within no more than 5 minutes and using an effective and engaging tone, body language and style, in line with a specific methodology and approach.[2] Self-advocacy, in addition to being a right of victims and survivors of institutionalization, gives real leadership to the owners of the cause themselves and lends the campaign strength, honesty and credibility, helping it to reach, persuade and mobilize all of its target audiences.
   • Agree on a human rights or legal reference that defines the group's attitudes and approach. The chosen reference must be based on the social and human rights-based models in terms of how it addresses disability issues.[3] The reference should therefore see disability as a situation where personal circumstances (disability in a sensory, physical, psychosocial or mental sense) and material and non-material environmental barriers, including attitudinal barriers, overlap. This clearly leaves no room for the medical model[4] of disability, which, as previously stated, remains one of the main reasons behind the prevalence of institutionalization. Here, the Convention and the comments issued by the Committee in relation to its articles on independent living should serve as the constitution of the group and the arbiter of any points of disagreement on concepts or principles.[5]
   • Identify the problem. This requires an analysis of the state of institutionalization in the country or place where the group will operate. This can be done through "reverse analysis", a process that involves asking questions and starts with the apparent problem, then goes back to its roots. For example, the apparent problem is clearly that people are being detained in residential institutions and that this constitutes a violation of a range of human rights. However, the question is: why were these institutions established? Why were people placed in them? Why didn't families try to retrieve their children so that they could live in their care? Why didn't the State think of solutions and alternatives to institutionalization rather than simply relying on this system?
   • Create a vision. It does not have to be realistic, as it is what activists want to see realized in the future. The vision is essentially the dream that the group seeks to realize. However, creating a vision requires knowledge of the reality to be changed. The vision usually captures the hoped-for reality, free of the identified problem and protected against its return.
   • Define and assign roles according to the expertise and interests of members without creating a hierarchical structure, so that the campaign has a coordinator, a spokesperson, a legal expert, a communication expert, and other officials. Each member of the campaign must have an influential role so that they can all see and feel the power and impact of their complementary expertise and concerted efforts.
2. Define the objectives of the advocacy campaign. The objectives should be responsive to the problem diagnosed by "reverse analysis", and should be "SMART": specific, measurable, achievable, relevant to the problem to be addressed and time-bound;
3. Develop a power map and spectrum of allies. This includes identifying entities and individuals that support, oppose, or are neutral towards the campaign's objectives. For each slice of the spectrum, specific tactics must be identified that will be used to encourage allies to support the campaign, to engage neutral entities so that they become supporters, and to persuade or at least neutralize opponents so that they do not hinder the campaign's achievement of its goals;
4. Prepare a concept paper that explains the reason for organizing the campaign and its objectives. This paper should be concise but comprehensive, and simple but not simplistic. It must therefore include the facts, figures and legal bases supporting the campaign's demands and objectives. It must also, naturally, be available in accessible formats that enable everyone to read and understand its content;
5. Map the tactics that the campaign will use to achieve its objectives. These tactics must be in keeping with and demonstrate the following:
   • Always start from the premise that the organizers of the campaign – including persons with disabilities, their organizations and supporting families – are the real experts who can be trusted to explain the nature and scale of the problem, the repercussions of not addressing it, and proposed innovative solutions that are consistent with the Convention and the human rights-based model.
   • Determine the contents of the message, keeping the target audience in mind. The language and register used to address decision makers differs from that used to address families and owners of residential institutions – whether businesspeople or voluntary organizations – who invest in this sector. Fully consider the position and background of opponents and neutrals to understand how they think and what questions or challenges they may raise, and then develop realistic responses to each of them.
   • Innovate. This requires influential messaging and the use of innovative methods to deliver that messaging, such as interactive audiovisual formats rather than traditional, more lengthy narratives. Given that politicians and decision makers have little time for reading, the more concise and direct the message or communication is, and the more numbers, graphics or images it includes, the more likely it will be read attentively and thoughtfully.
   • Invoke and refer to the Convention and other human rights treaties, the concluding observations and comments issued by their committees, and the observations and reservations in relation to institutionalization expressed by national, regional and international human rights organizations.
   • Begin lobbying relevant parliamentarians and ministers early if the campaign seeks to repeal or amend a particular piece of legislation. This requires preparing an amendment proposal that is supported by detailed rationale to ensure that what is needed is achieved with extreme precision.
   • Provide creative, realistic and thoughtful solutions to dismantle the residential institutions that fall within the scope of the campaign, while preparing evidence-based responses to any concerns raised by decision makers, families or workers in the targeted residential institutions.
   • Cite successful examples and models of deinstitutionalization and the promotion of independent living from countries whose economic, cultural and social contexts are similar, even if only slightly, to the country in which the campaign is organized.
   • Develop precise mechanisms to monitor and evaluate the progress of the campaign, its achievement of its objectives, and the degree of response from the various allies. These mechanisms must be based on the agreed objectives and reflect quantitative and qualitative indicators that can be analysed and from which conclusions can be drawn. They must also be responsive to any new challenges or pre-existing, unchanged obstacles.
   • Document the campaign's activities from beginning to end in audio, video and written formats. This is to provide evidence of the successes and lessons learned from any failures or shortcomings in the campaign's work and how they were dealt with.

Q18. How can persons with disabilities and their organizations make effective use of international cooperation programmes to promote the cause of deinstitutionalization and the establishment of independent living?

A18. International cooperation programmes are indeed an effective mechanism through which organizations of persons with disabilities and their supporters can push for an end to institutionalization, its abandonment and the transition to community and family inclusion and independent living. Therefore, there are a series of facts that must be recognized and steps that must be taken, including:

1. Analyse the policies and rules governing external grants from the donor community that are aimed at supporting development, human rights, social affairs and any other area that may be related to the issue of institutionalization. Organizations of persons with disabilities, organizations for children's rights and older persons' rights, and civil society organizations generally should work together where these rules or policies contain any provisions that allow recipient governments to use the grants to strengthen the system of residential institutions, whether directly or indirectly. The donor community must be lobbied to amend the conditions of grants so that they are always consistent with the Convention, promote independent living, and oppose all forms of institutionalization. This is what disability alliances in Europe have succeeded in achieving: they have been able to include provisions in the rules governing and regulating European Union grants that prohibit the use of these funds in any project or programme that perpetuates exclusion and isolation. Moreover, these rules require States and grant recipients to promote the transition from institutionalization to family and community inclusion;[6]
2. Monitor the disbursement of grants allocated to the rights and issues of persons with disabilities, development, children, family programmes, and other areas. This is to ensure that the recipient of the grant does not breach the terms of the agreement concluded with the donor in terms of not spending on residential institutions. This includes expanding such institutions, increasing their capacity or maintaining them. In the event that any of this is observed, organizations of persons with disabilities and their advocates must include these observations in their monitoring reports, send them to the relevant authorities, and follow up on the actions taken;
3. Build partnerships between local, regional and international organizations operating in the field of deinstitutionalization and develop well-thought-out project proposals to attract grants specifically aimed at promoting all aspects of independent living and ending all forms of institutionalization;
4. Communicate with the relevant government agencies, urging them to include the issue of deinstitutionalization, as well as basic and support services in local communities, in their bilateral agreements with donors and supporters, and clarifying the opportunities and benefits this will bring for the State, society and individuals, especially persons with disabilities and their families.

Q19. How can organizations of persons with disabilities and human rights organizations make effective use of shadow reports and parallel or alternative reports submitted to the Committee as well as the complaints mechanism under the Optional Protocol to the Convention to reduce institutionalization and promote independent living?

A19. The mechanisms by which various kinds of reports by organizations of persons with disabilities, as well as individual and institutional complaints, are submitted to the Committee undoubtedly represent an effective lobbying tool to keep the spotlight on the institutionalization crisis, the need to address that crisis and the need to replace institutionalization as soon as possible with a community-based service system that promotes the right to independent living. These mechanisms require organizations of persons with disabilities and civil society organizations in general to verify key aspects and take pivotal steps, which can be summarized as follows:

1. Ascertain how the Convention is being monitored in the country, in terms of the periodic report the country submits to the Committee, the quality of these reports, and whether they cover all articles of the Convention or focus on specific articles and rights, as this will determine the type of shadow report to be prepared by civil society organizations. Shadow reports usually serve as responses to what the State has said in its own report. If the State report essentially does not address Article 19 of the Convention, then civil society organizations should address the issue of institutionalization either through other relevant provisions such as Articles 3, 4, 5, 7, 12, 14, 15, 16 and 17, or through a parallel report in which organizations are free to document and monitor as many articles of the Convention as they wish, regardless of whether or not they appear in the official state report.[7] If the State has not actually submitted a report to the Committee, civil society organizations may write a separate alternative report or contribute to the reporting process established under the Paris Principles[8] for national human rights institutions or centres[9] in the country. It should be noted that the Committee cannot discuss any report submitted by civil society organizations in isolation from the official report. In other words, if the State does not submit its periodic report, the Committee cannot review or discuss unofficial reports.[10] In this case, civil society organizations must seek other means of making their voice heard by the Committee, such as through the Optional Protocol or by calling for the State to be consistently urged to submit its official report on time;
2. Submit individual or institutional complaints to the Committee under the Optional Protocol,[11] provided that the State has ratified it, the complainant has exhausted all national remedy mechanisms without success – whether by submitting complaints to national executive bodies or to judicial bodies – and all other procedural conditions for submitting a complaint[12] are met. If these requirements are met, the Committee is obliged to consider, verify and decide on the complaint by communicating with the State party, the complainant and any other parties that can help establish the facts;
3. Develop the knowledge and technical and institutional capabilities of organizations of persons with disabilities in writing various types of monitoring reports, presentation skills, constructive dialogue, networking, coalition-building, and lobbying and advocacy activities at the United Nations, fully briefing them on the procedures for reporting, hearings and discussions. Such knowledge and skills will make organizations of persons with disabilities powerful partners and ensure that their voice is listened to with great interest by all.