B. Frequently Asked Questions

Q8. How can institutionalization be abandoned and independent living established?

A8. Abandoning institutionalization is a multilayered and multi-faceted endeavour. The transition away from restrictive environments that have become established in society over decades to become the only reality victims know is akin to the process of rehabilitating of innocent prisoners who have spent decades in prison and transforming prisons into facilities that provide public services for all. This process requires political, legislative and operational steps that can be summarized as follows:

1. Reviewing the policies and legislation that govern care homes and care programmes. Amending these should start with repealing clauses and provisions that authorize the establishment of residential institutions, in addition to setting specific time frames in which governmental and non-governmental entities are obliged to implement solutions and alternatives to this system. This review process should include strategies and corresponding implementation plans, as well as laws, statutes, regulations, instructions, ministerial decisions, and other legal instruments. This is to ensure that all such instruments are aligned in order to achieve the desired shift from institutionalization to full inclusion;[1]
2. Putting interim provisions in place until the transition to an inclusive system is complete, under which the licensing of any residential institutions or programmes is suspended and their expansion is prohibited. This is to prevent the circumvention of the transition plan and the imposition of a fait accompli that may be difficult to change in the future;
3. Designing and implementing information and awareness-raising programmes on the dangers of institutionalization, its cumulative negative impact on individuals, and the benefits of family and community inclusion for individuals, the family and society at large. These programmes and campaigns should be non-traditional, adopt direct and innovative messaging, and draw on successful trials and models from contexts similar to those of the target group;
4. Empowering persons with disabilities and their organizations to play a leading role in the process of deinstitutionalization and the transition to independent living. This should be done while continuing to empower these organizations, as well as civil society and human rights organizations, to conduct advocacy campaigns to pressure the State to take deinstitutionalization and independent living seriously and place them at the top of its priority list. Meanwhile, these organizations should be actively involved in the legislative and institutional reform process, its implementation, follow-up and evaluation;
5. Ensuring that those responsible for managing and operating residential institutions are not permitted to assume any leadership roles in the deinstitutionalization process[2] in order to avoid conflicts of interest and prevent their professional background or attitudes formed through working in residential institutions from having any influence on the policies, strategies, programmes and services that represent alternatives to institutionalization;
6. Providing effective and realistic alternatives to institutionalized services, announcing them within specific time frames and ensuring the allocation of adequate and sustainable budgets for the implementation of each of them.

Q9. What are the alternatives to institutionalization and what are their key general and specific characteristics?

A9. Replacing institutionalization with inclusive community-based, non-residential services and programmes requires all of the latter to be governed by specific rules and for each proposed service to meet individual and family needs.

1. Possible alternatives to institutionalization and inclusive independent living services;

   Alternatives and services that promote independent living represent a common goal for stakeholders in the process of deinstitutionalization and the transition to a family- and community-based system that is inclusive of all people,[3] including persons with disabilities. The main alternatives and services and their respective attributes are outlined as follows:

   • Living in an independent home alone or with a person or people of one's choosing. If the person moving out of a residential institution is an adult who can live alone in his or her own home within a community setting, or with one or more people of his or her choosing, this choice must be respected and supported to enable the person to manage his or her life autonomously and independently. This requires providing an adapted home and enabling the person to independently and privately access and obtain the services he or she needs, while providing home services as needed.
   • Living with a biological, extended or foster family. This is a decision and choice to be made by the individual after decision-making support has been provided, if needed.
   • If the person transferred from the residential institution is a child or an adult whose will and decision cannot be inferred, a return to the biological family should be the first recourse, as many people will have been placed in residential institutions at the decision of one or both of their parents or a guardian such as a sibling. This may have been for a number of reasons,[4] including a lack of knowledge or inability to provide care for the person and enable him or her to live independently in his or her family environment due to the absence of rehabilitation and training programmes and support services. Alternatively, it may have been due to stigma, which drives many families to send their children out of their city, governorate or even country of residence, in order to place them in residential institutions out of sight of the surrounding community. An absence of family support may be a reason why government agencies place individuals born out of wedlock in such institutions. Therefore, where a biological family for an individual exists, discussion of any other alternatives becomes a secondary consideration, as efforts should be made to convince, equip and train the biological family to care for the person following his or her discharge from the residential institution and to prepare the family home and community environment. There is also a need to provide continued support and follow-up programmes to prevent any relapse in the individual or his or her family that could prompt the latter to consider returning the individual to the residential institution or subjecting him or her to restrictive and inhumane conditions within the home that resemble those in the institution from which he or she has been discharged.
   • Alternative families that are related to the individual through the extended family[5] rather than the individual's parents or siblings, such as grandparents, uncles or aunts, among others. If a biological family does not exist for the individual or cannot care for him or her, the extended family should be the next resort, as it is considered to be the most appropriate environment for the individual, both emotionally and socially. The training, equipment and support requirements that apply to the biological family naturally also apply to extended families. However, these families may need more psychological and social support programmes than the immediate family due to their lack of exposure to or knowledge of the person's situation and the demands posed by his or her transfer from a residential institution to an inclusive family environment.
   • Alternative unrelated families. Such families form part of adoption programmes in countries where this is permitted by legislation, or part of foster care or kafalah[6] programmes in countries whose laws prevent adoption but allow for alternative forms. Their competence, ability and compliance with the conditions to provide alternative care, whether in the form of adoption, foster care or kafalah, must be ascertained through a social, psychological and physical assessment to ensure that the person with a disability being transferred into their care will be in a safe and truly inclusive environment.[7] They shall also need the same support, training and follow-up programmes as immediate and extended families.
2. Below are some of the features that all alternatives to institutionalization and independent living services must include:
   • A realistic and practical design. This requires the development of plans and progressive transitional stages that take into account the need for an intermediate stage between the restrictive environment in which the individual lives and the open family and community environment. This is in order to mentally prepare and physically rehabilitate the individual and to train the family to accommodate his or her living requirements. The community environment must also be prepared so that it is accepting of diversity and difference.
   • Respect for the choices and decisions of the individual. As independent living is based on respect for individual autonomy, it would be unacceptable to impose an alternative to institutionalization on an individual without due regard for his or her preferences and choices. Therefore, any alternative, even if it seems ideal to those managing deinstitutionalization programmes, must have the free, informed consent of the person who will be placed in or benefit from the alternative. This highlights the importance of the aforementioned decision-making support model as the main tool for enabling persons with intellectual disabilities, including children, to understand the nature, advantages and disadvantages of the proposed alternative to institutionalization through a clear and simplified explanation; inferring whether the person wishes to accept it, reject it or perhaps request another alternative; and acting in accordance with those wishes.
   • Consideration for the cultural, social and religious background of the individual, family and society. For example, it would be illogical to set up a fostering or kafalah programme and call it an "a campaign to encourage adoption" in a society whose beliefs and legislation do not permit adoption in the strict sense of the word. The process of selecting alternative families must also be sensitive to the age group of the individual who will join the family, as there are different conditions and requirements for the kafalah or fostering of an adult who has been in a residential institution compared to those for fostering a young child or adolescent. Consideration must also be given to the gender dimension of fostering within the societal context. In small, conservative societies, the fostering of girls in a family that includes adult boys may be a sensitive and perhaps worrying issue. Therefore, one of the most important first steps to take before making a decision regarding foster care or kafalah is to conduct case studies and a comprehensive survey of the family and its community environment.

Q10. What services must be established and provided in order to achieve a real shift from institutionalization towards independent living in its fullest sense?

A10. It is important to develop a national strategy that ensures the provision of basic services, including health, education, family support and rehabilitation services, among others, in adapted forms within the local community. This strategy should be based on principles of inclusive community development.[8] The services that must be provided to achieve independent living can be split into two main categories:

1. Basic public services that are accessible to all, provided in adapted and accessible forms and with reasonable accommodations. Their aim is to allow independent and private use by persons with disabilities who are moving from residential institutions into the community and their families in order to ensure the full, effective and independent enjoyment of their civil, political, economic, social and cultural rights. These services include:

   • Inclusive education that meets the requirements of students with disabilities at various stages.
   • Primary, specialized and adapted health care, including early detection and intervention services, reproductive and sexual health services, and mental health services.
   • Vocational and technical rehabilitation programmes and services that fulfil the wishes of persons with disabilities.
   • Employment and work programmes in the public and private sectors in work environments that are free of physical and attitudinal barriers.
   • Access to justice in environments that ensure that such access is equal at the investigation, litigation, testimony and conclusion stages of legal proceedings.
   • Credit and banking services that are designed to be accessed completely independently and privately through the adoption of laws, regulations and statutes that allow for maximum use of assistive digital technology. Banking institutions must be designed to be physically accessible, and their personnel must be trained to communicate with customers with various disabilities.
   • Adapted culture, sports, and leisure and entertainment services.
   • The provision of facilities for political participation, especially polling stations, electoral information, and support to join parties, unions, gatherings, and other activities.

   Before moving on to dedicated specialized services, it should be noted that it is wrong for executive bodies to view some services as important and others as dispensable. It is often believed that persons with disabilities, especially those who are not enrolled in institutions, are primarily in need of medical and rehabilitative care rather than other services. This is due to the medical view of this issue being more deeply engrained. Therefore, those responsible for the deinstitutionalization process must ensure that each service is designed and implemented in a way that is conducive to achieving independence for individuals and full inclusion in the community and the family. This requires the provision of decision-making support programmes[9] across all stages of the process of transitioning away from institutionalization and designing and implementing alternatives to it. It also requires the promotion of inclusive design principles in all sectors.[10]

2. Dedicated specialized services for independent living services. Before we proceed to list key specialized services, it should be noted that their being dedicated and/or specialized does not at all imply that they should be provided in environments that are isolated from the community. They must be provided within and through the local community in order to achieve the principle of inclusion,[11] which requires services for persons with disabilities to be an integral part of the overall system of services and facilities. For example, mobility services for blind persons who use a white cane or a guide dog should not be provided in locations that are isolated from their community environment. Based on this key principle, key specialized independent living services can be summarized as follows:

   • Decision-making support services, especially for people with intellectual disabilities and children, are essential specialized services that are required to achieve independent living based on respect for individual choices and decisions. These services require legal experts, effective communication, and the ability to infer and accurately and faithfully convey the individual's wishes.
   • Personal companion services.[12] These are the cornerstone of independent living for many people with disabilities. This service requires the availability of professionally trained personnel to provide assistance to people with various disabilities on request, including assistance to carry out day-to-day activities. This may involve one or more activities depending on the nature and degree of an individual's disability and the extent to which the surrounding environment is adapted. The activities include assistance with mobility, reading, writing, taking medication, eating, drinking, dressing, going to the bathroom and bathing. The work performed by a personal companion is determined by the person with a disability, and the training and employment expenses for the companion must be covered by the State budget, whether through the central government or local authorities.
   • Psychological support and peer support services. The transition from residential institutions to the community undoubtedly places great psychological pressure on individuals because they move from a prison-like environment to the outside community with all its interactions and contradictions. Psychological support and inspiration drawn from the experiences of others through peer support are therefore important pillars for the success of independent living.
   • Physical rehabilitation and occupational therapy services, as needed. Where these services exist in residential institutions, they are random, do not take into account individual differences and are often of low quality. The provision of these services is essential for many persons with disabilities in general and for those transitioning from institutionalized settings to the freedom of inclusion and living independently in particular.
   • Mobility services. These involve the removal of physical obstacles, the preparation of roads and pavements, the provision of traffic signals with audible alerts, the adaptation of modes of transport, and training of workers in the transport sector and traffic police on how to communicate with persons with disabilities and how to offer and provide assistance. This is in addition to optimal use of and training on assistive devices such as white canes, as well as the use of floor indicators, guide dogs, wheelchairs for blind and visually impaired persons, wheelchair users and others.
   • Family support services; training for families on how to communicate with persons with disabilities; and the provision of assistive devices, home rehabilitation services, medical care services, and equipment for day-to-day activities with the aim of establishing a family and community environment that is free of physical and attitudinal barriers.[13] Families must develop their skills in order to be able to meet the needs of persons with disabilities living in their households and cope with the potential societal pressures associated with stigma around or non-acceptance of disability.
   • Financial support services for individuals and their families. Deinstitutionalization brings not only social and ethical benefits for the State, but also a financial return, as inclusion and independent living represent the best investment in people and society. Therefore, enabling individuals and their families to face difficult circumstances and cover the expenses of the special requirements for independent living is a necessity, provided that such support is based on balanced case studies as well as monitoring and follow-up mechanisms that ensure it is transparent and effective.
   • Housing adaptation services, [14] which ensure the adaptation and modification of the individual or their family's home[15] so that he or she can freely use all the facilities therein independently and safely. This includes ensuring easy access and entry to the dwelling as well as use of the bathroom, kitchen and other rooms. It also requires furniture and household items to be adapted for the individual's use, which is easy to achieve given the wide range of products manufactured according to inclusive and accessible design standards.
   • Maximizing the provision and use of assistive technology. This technology now plays a pivotal role in overcoming many obstacles and allowing individuals to carry out many of their day-to-day activities independently, privately and effectively.

   These and other specialized services should be provided to a high standard and in close consultation with the persons with disabilities they primarily concern. The services should not impose financial burdens on persons with disabilities or their families, as they are essential for a fundamental right, namely the right to live independently, to be enjoyed and exercised on an equal basis with others in its fullest sense and to its fullest extent.