B. Frequently Asked Questions

Q11. Is it true that independent living and the transition away from institutionalization towards community integration cannot be promoted or still be applied during emergencies, disasters and crises?

A11. This belief is in fact wrong, and it has negative implications; first and foremost, it perpetuates rationalizations for institutionalization that are inconsistent with human rights, logic and practice. All of this can be refuted as follows:

1. "Providing a safe environment" for persons with disabilities, children without family support and older persons remains the main motive behind and rationalization for the use of institutionalization. In emergencies and crises, this argument gains traction as its proponents promote their views and disseminate misleading information, actively spreading the idea that emergencies and crises place the most vulnerable people at greater risk, making "residential institutions the ideal place to ensure their protection and wellbeing". While persons with disabilities must indeed be a key focus and top priority during emergencies and crises, this in no way means that they should continue to be placed in residential institutions, even in such circumstances. Rather, all emergency, rescue, evacuation and relief services should first be adapted to meet the accessibility requirements of persons with disabilities. Empirical evidence has shown that the first people affected by crises and emergencies are those enrolled in residential institutions. Perhaps what happened to such people, especially those with disabilities,[1] at the outset of the COVID-19 pandemic is conclusive evidence of this, as all such institutions, prisons and other closed and isolated environments became hotbeds for the pandemic, allowing it to spread among the individuals living and working in them. The same applies during natural disasters such as earthquakes and floods, as it is completely unfeasible to handle the rescue of dozens of residents who are clustered together in one area, especially when each of them has different rescue, assistance and evacuation requirements. If persons with disabilities live within families and communities in environments that meet the needs of everyone, the process of dealing with emergencies and crises becomes easier and safer, as emergency plans and services are inclusive and comprehensive, and family and community support represents the strongest form of protection in such situations;[2]
2. Emergencies and crises should not be used as a justification for putting the deinstitutionalization process on hold. However, some States may be unsure about what to prioritize and may see deinstitutionalization as a matter that should be postponed until the crisis or emergency has come to an end. In reality, as mentioned above, the shift from institutionalization to community inclusion and independent living is essential and must be enforced. Even in emergencies, there is good reason to promote independent living, which strengthens community cohesion and solidarity. It should also be noted that monitoring of residential institutions is significantly reduced during disasters and crises, as State agencies are busy providing emergency and rescue services. This increases the likelihood of acts of violence and violations of the rights of those enrolled in such institutions, which can have the gravest consequences;
3. The process of deinstitutionalization and the transition to independent living in this context requires making adjustments to crisis and disaster response plans and to the emergency services to make them inclusive and accommodating of persons with disabilities. This is in addition to training the individuals discharged from residential institutions, their families and relevant community organizations in first aid and how to seek and provide assistance. Furthermore, in such situations, information, data and guidance should always be made available in accessible formats, such as sign language, audio description, Braille, large print or Easy Read.

Q12. How can we respond to the persistent concerns and arguments put forward by sceptics about the feasibility and effectiveness of independent living and deinstitutionalization for persons with disabilities?

A12. Responding to the arguments of those who doubt whether independent living and deinstitutionalization are really achievable requires addressing the following prevailing myths, which give rise to scepticism around these two issues:[3]

1. The belief that "persons with disabilities inevitably need care and assistance, and this prevents them from living independently like others." This assumption and stereotype defies logic and reality on two fronts: Firstly, nobody is claiming that independent living means that a person, with or without a disability, will require no support or care services whatsoever. Everyone on Earth needs support and assistance in one or more aspects of their lives in order to be able to carry out day-to-day activities and enjoy their rights and freedoms, and this does not undermine their individual autonomy and privacy. Persons with disabilities are just like everyone else in this respect. Some may need one or more assistance or support services in order to exercise their right to live where and with whom they want.[4] Secondly, the assumption that all persons with disabilities are in constant need of care and assistance is rooted in a stereotype that stems from the medical model and guardianship approach discussed previously. Persons with disabilities, like everyone else, have individual differences and varying requirements. This applies not only to different disabilities, but also to persons with the same disability. For example, persons with moderate or severe intellectual disabilities have different needs depending on the various rehabilitation and training programmes they have each followed, the availability of reasonable accommodations, the education and knowledge they have attained, and other circumstances, each of which affects the individual and his or her surrounding environment. Naturally, requirements also vary according to the nature, type and degree of disability. Therefore, blind persons have different requirements for independent living compared to visually impaired persons, and the requirements of both these groups differ from those of deaf persons, and from those of hearing impaired persons, who will need other arrangements, and so on, just as individuals without disabilities may differ according to their upbringing, inclinations, education, qualifications and culture;
2. "Living in residential institutions, and receiving rehabilitation and education services in separate special schools and centres, provides a safe space for persons with disabilities that protects them from possible abuse and bullying in their community environment." This argument, which expresses the deep-rooted negative stereotypes that often hamper the deinstitutionalization process,[5] reflects a significant trend in many countries around the world that opposes the transition from institutionalization to community inclusion and independent living for various reasons, which are intertwined with an interest in preserving the financial and career gains made over many years by those managing residential systems.[6] However, history and reality show that residential institutions have never been a safe place for their residents. Instead, isolation and separation from the surrounding community fuel various forms of violence, as evidenced by numerous investigative reports and judicial investigations that have revealed the painful violations that have been inflicted on persons with disabilities by caregivers in these institutions. In contrast, living in a community and family environment provides people with safety and protection from violations. However, it should not be forgotten that family environments are not necessarily always ideal for either persons with disabilities, or other people, as there are many cases of domestic violence where persons with disabilities have been victims. In that regard, we would like to reiterate that it is essential to conduct in-depth, comprehensive assessments and surveys of each case where an individual is to be transferred from a residential institution to family-based or independent living. Furthermore, decisions on appropriate alternatives must always be based on the individual's own choices and decisions and after he or she has been offered a decision-making support service, if needed;
3. "Residential services are less costly and require fewer financial resources than independent living." Firstly, it is important to stress that the low financial cost of a practice that violates human rights cannot be a reason to legitimize or accept it, nor can such an argument be made on the basis of the high cost of any measure that ensures the enjoyment and exercise of rights and freedoms on an equal basis with others. Furthermore, this argument has been proved inaccurate by scientific and empirical evidence. Reliable studies and surveys[7] indicate that the cost of institutionalization is much higher in the short, medium and long term than the cost of independent living. In addition to the high operational costs of residential institutions – including for buildings, maintenance, furniture, fuel, water, transport, food, clothing and staff wages – rehabilitation, treatment, recreation and training services tend to be very costly if they are of reasonable quality. Here it must be noted that residential services currently tend to be of a very low quality in most countries where they are provided. Despite this, they consume more financial resources than independent living measures would require.[8] This is what happens in the short term. However, in the medium and long term, the aggravation of disability experienced by those placed in residential institutions due to their restrictive environment, and the deterioration of their psychological and mental state, will create more complex and costly health and rehabilitation needs. Meanwhile, specialized studies and surveys confirm that in addition to fulfilling a person's natural right to live within his or her community and family environment, independent living does not necessarily involve high costs, as in the case of residential services. The adaptation of surrounding services, such as transportation, facilities, roads or education, is an investment in society as a whole, as it benefits all members of society, not just persons with disabilities. Meanwhile, although the cost of some support services, such as personal companion and home services, is determined by the quantity and quality thereof and according to the needs of each person, it will not match the sum spent on wages and qualifications for full-time workers in residential institutions;
4. "Deinstitutionalization will lead to an unemployment crisis as workers in residential institutions will find themselves without jobs." In reality, deinstitutionalization does not mean that those working in residential institutions are dispensable and should be abandoned. The transition to independent living, and the community-based services it requires, will need a significant amount of personnel to make the service system operational and accessible to people with disabilities. There is nothing wrong with workers from former residential institutions who believe in inclusion and have sufficient experience playing a role in strengthening the system of independent living services, provided that they do not lead the deinstitutionalization process itself. This is to avoid conflicts of interest and any unintended influence their long experience in residential institutions may have on the nature of the proposed alternatives;
5. "Abandoning residential institutions and replacing them with a system of community-based services is a practice that works well in countries with vast financial resources and whose societies are reasonably accepting of others and respectful of diversity." The movement against deinstitutionalization uses this argument as a premise for questioning any initiative aimed at transforming institutionalization into an inclusive system, especially in developing countries. However, this argument completely overlooks the fact that countries whose limited financial resources are said to prevent the transition to independent living are already spending huge sums of money on residential institutions and increased monitoring whenever incidents of violence or abuse are revealed. Proponents of this argument also fail to take into account the cost-effectiveness of inclusion and independent living in the medium and long term, as previously discussed. In terms of societal awareness, acceptance of disability as a form of diversity, and how these factors affect the achievement of inclusion and independent living, the argument is valid. However, in this case, inclusion is achieved through learning by doing. It is not possible to wait for a comprehensive and complete change in attitudes and ideas in wider society, as such change is a continuous process that requires persistent effort. Consequently, raising awareness, disseminating knowledge, and changing attitudes and value systems should go hand in hand with implementing the shift from institutionalization to inclusion. This is what the countries that have achieved results in this regard, and who are cited by proponents of this argument, have done and continue to do. Last but not least, experience shows that several countries with limited resources have succeeded in abandoning institutionalization and establishing a cohesive and stable system of community-based services, and these services have contributed to the promotion of independent living.