B. Frequently Asked Questions

Q13. Which countries have been successful in promoting the practice of independent living for persons with disabilities and abandoning institutionalization, or have begun this process despite limited resources?

A13. Paradoxically, the countries that witnessed a kind of deinstitutionalization revolution in the early 1990s were countries with totalitarian political systems, weak economies, and a societal culture where the concept of human rights was not particularly established. Deinstitutionalization movements have since continued, with countries that have fewer resources and capabilities remaining at the forefront of the initiative and of those working to shift from institutionalization to inclusion and independent living.[1] This is because these countries appear to have realized that the tragic reality of institutionalization and its harmful implications for the present and future limit development in the social, cultural, human rights and economic spheres. Below, we examine examples continue to be benchmarks for promoting independent living policies, plans and programmes.

1. Following the revolution against its long-ruling communist regime, Romania was one of the Eastern European countries that witnessed the greatest amount of deinstitutionalization, and where the situation had been unimaginably appalling and degrading. The Government began to develop child rescue and child care policies and programmes, which resulted in the release of thousands of children from residential institutions and their reunification or placement with biological or alternative families;[2]
2. Although Moldova is one of the poorest countries in Europe,[3] it is one of the most successful countries to have embarked on, and still has a pioneering role in, the deinstitutionalization process, especially for persons with disabilities, as well as the adoption of inclusive alternatives that are rooted in the concept of community-based services in order to achieve independent living in its strictest sense. Between 2011 and 2018, through carefully designed policies, plans and programmes, Moldova was able to reduce the number of people enrolled in 67 residential institutions across various regions, holding a total of 11,000 people, by 83 per cent;[4]
3. Since 2010, Bosnia and Herzegovina has been making great strides in deinstitutionalization, especially with regard to persons with psychosocial disabilities.[5] A package of community services, psychosocial support programmes, and awareness-raising and anti-stigma campaigns has been designed and implemented, with all these measures complementing each other to result in remarkable advancements towards the achievement of community inclusion and independent living. All of this in spite of the fact that Bosnia and Herzegovina was only just emerging from a brutal war and very difficult economic conditions. However, the State realized that crises should be opportunities for improvement, development, and justice and fairness for all;
4. Bulgaria is another country that began the deinstitutionalization process early on, despite its difficult economic situation. Bulgaria has made remarkable progress in removing large numbers of children from residential institutions and placing them with their biological or alternative families. The country also developed a system of community services that has contributed to the success of the process and the promotion of independent living and community inclusion. Although the deinstitutionalization process has stalled for various reasons, Bulgaria, with the support of European organizations and organizations of the United Nations, has been undertaking a comprehensive review of the strategies, plans and steps to establish alternatives to institutionalization in an effort to improve and develop them.[6]

Q14. To what extent is the right of persons with disabilities to live independently a priority in the policies, legislation and practices of Arab countries?

A14. Although Arab countries have ratified the Convention,[7] the right to live independently – which is one of the key pillars of the disability rights system and the basis for the implementation of a package of interrelated civil, social, economic and cultural rights as discussed previously – has not been adequately addressed, promoted or protected in the majority of Arab policies and legislation relating to disability. The implementation of Article 19 of the Convention appears to be facing clear strategic, institutional and practical challenges in most countries of the Arab region.[8] Further efforts must be made in relation to attitudes towards the rights and issues of persons with disabilities in order to achieve a real shift at various levels from the medical and welfare models to social and human rights-based models.[9]

1. In the Lebanese Republic, Act No. 220 of 2000 on the rights of persons with disabilities, which is currently in force, is considered to have set a precedent in Arab legislation as one of the first comprehensive laws addressing specific themes such as accessibility, rehabilitation programmes, health care and the establishment of a special body to oversee and monitor disability issues. This was before the Convention had even been published. However, this law did not contain any reference to independent living or the requirements for achieving it and consequently contains no provisions on putting an end to or reducing the use of institutionalization;[10]
2. In the Republic of Tunisia, General Principles Act No. 83 of 15 August 2005 on the advancement and protection of persons with disabilities[11] contains some provisions referring to priority being given to persons with disabilities living in family environments, whether with their biological families or with alternative families through the kafalah process. Article 17 thereof states that the responsibility for caring for persons with disabilities "who are vulnerable, have a clear physical impairment, or lack family support" lies with the State and the bodies and structures concerned with disability. The Article then lists a set of measures that must be taken to ensure that this care is provided. These include "providing care for disabled persons within their families, allocating financial support to poor disabled persons or their legal guardians to help cover basic needs, and placing disabled persons with alternative families through the kafalah process." It may appear from this wording that Tunisian law adopts an approach that opposes institutionalization and promotes independent living within an inclusive community and family environment, but this is not the case, as Article 17 of the Act lists placement in residential institutions as a measure that can be considered for the provision of care. It mentions: "Placing disabled persons in institutions that specialize in accommodating and caring for persons with disabilities." This institutionalization-based approach is reinforced in Article 18 of the same Act, which stipulates that: "Natural and legal persons may establish private institutions that specialize in the accommodation and care of persons with disabilities in accordance with conditions and procedures that shall be determined by a joint decision of the Ministers responsible for social affairs and public health." Some may suggest that this favourable approach to institutionalization is due to the fact that the aforementioned law was introduced before the adoption of the Convention by the General Assembly of the United Nations. However, it should be noted that there was an ideal opportunity to change this legislative reality when, in 2016, a law was issued amending the Act of 2005.[12] However, the amended law unfortunately did not address the provisions on institutionalization at all;
3. In the Kingdom of Bahrain, Article 4 of Act No. 74 of 2006 on the care, rehabilitation and employment of persons with disabilities[13] includes institutionalization as a type of care that can be licensed and provided: "The Ministry shall endeavour to establish rehabilitation centres and institutes, care homes and workshops for the disabled, as well as residential institutions in cases where those with severe disabilities require them. No rehabilitation centres, institutes, care homes, residential institutions or workshops for the disabled may be established without a license from the Ministry. The license shall be issued in accordance with the rules and conditions set out by a decision of the Minister following agreement with relevant ministries and the approval of the Supreme Committee." It is worth mentioning that the National Strategy for the Rights of Persons with Disabilities (2012–2016)[14] included, under the theme of social empowerment, references to the need to shift away from institutionalization to other forms of care, including alternative families and "housing for independent living". These references are limited and the alternatives they offer are controversial, as they represent residential institutions in miniature form, as previously stated with regard to group homes. However, the inclusion of this issue is a positive sign that must be built upon to achieve a real shift towards fulfilling the right to live independently, alone or within the family environment – in accordance with the person's own choices and decisions – and always within the community;
4. In the Sultanate of Oman, a wide range of rehabilitation, financial and employment services are provided by government bodies, the voluntary sector and the private sector,[15] and a significant role is played by effective community-based rehabilitation programmes, which provide many services within local communities for persons with disabilities and their families. While all this is very commendable,[16] Royal Decree No. 63 of 2008, introducing the Care and Rehabilitation of Disabled Persons Act,[17] is based on the medical perspective and the welfare approach in terms of how it defines disability, inclusion and rehabilitation. In this sense, it does not include any provisions that indicate that the placement of persons with disabilities in residential institutions outside the Sultanate is prohibited. This is what currently happens as part of the package of services announced by the Ministry of Social Development. Furthermore, there are no provisions indicating that residential institutions may not be established in the Sultanate of Oman. It should be noted that in 2021, the Sultanate of Oman issued a Royal Decree[18] amending the 2008 decree. However, this amendment simply replaced the terms "disabled person", "disabled persons" and "persons with special needs" with the phrase "persons with disabilities", and did not address substantive provisions on civil, political, economic, social and cultural rights, including the right to live independently;
5. In the State of Kuwait, Act No. 8 of 2010 on the Rights of Persons with Disabilities[19] included residential services as a type of care that must be provided. Article 12 of the Act set a time frame for the executive authorities to establish residential institutions in each governorate, stipulating that: "The Government is committed to providing habilitation and training centres, rehabilitation centres, training workshops for persons with disabilities, and care homes for cases that require them in all governorates and staffing these facilities with experienced, competent and specialized personnel. This must be accomplished within eight years of this Act's entry into force." Naturally, such an approach is inconsistent with the deinstitutionalization approach, which calls for institutionalization to be abandoned and independent living to be promoted for persons with disabilities;
6. In the Republic of Iraq, Act No. 38 of 2013 on the Care of Persons with Disabilities and Special Needs[20] contains definitions of inclusion and rehabilitation services in terms that ensure that care services are based on a conventional individual perspective that focuses on disability as a personal medical condition independent of environmental and social obstacles and barriers. The Act therefore contains no explicit or even implicit reference to the right to independent living in its broader sense, nor does it address the issue of prohibiting or limiting residential services;
7. In the Arab Republic of Egypt, Act No. 10 of 2018 on the Rights of Persons with Disabilities[21] is considered one of the most progressive laws in the Arab region, as it includes a package of provisions and definitions that are largely consistent with the Convention. However, the Act does not include any clear provisions that refer to independent living as a fundamental right that expresses individual autonomy. Nor does it address respect for freedom of choice, or access to facilities and services with due consideration for privacy. Furthermore, the Act does not address the issue of prohibiting institutionalization and shifting towards inclusive practices. It includes definitions related to inclusion and community-based rehabilitation, and addresses the empowerment of persons with disabilities, respect for their choices and their inclusion in social protection programmes and services, but these provisions either form part of the general provisions or appear in the context of setting rules for care, protection and empowerment services. The Act does not reflect the concept of independent living in most accurate and comprehensive sense, which includes the abandonment of all forms of institutionalization.

Q15. Do the laws and practices of Jordan constitute an example of best practice in the region, and if so, why?

A15. The Hashemite Kingdom of Jordan was in fact one of the first Arab countries to address, in explicit legal terms, the issue of deinstitutionalization, the transition to community inclusion and the promotion of the right to independent living in its most accurate sense. It did so from several angles, the key ones being:

1. Explicitly prohibiting and replacing institutionalization. The Jordanian Rights of Persons with Disabilities Act (No. 20 of 2017) contains clear provisions that prohibit the establishment of any residential institutions. It also obliges the executive authorities to find solutions and alternatives to institutionalization and fully implement them within a period not exceeding 10 years from the Act's entry into force at the end of August 2017, in other words, by the end of August 2027.[22] Article 27 (c) of this Act stipulates that: "The Ministry of Social Development shall, in coordination with the Council: (i) Develop a comprehensive national plan that includes interim and permanent solutions, and alternatives, to government-run and private residential institutions. (ii) Transform non-government-run residential institutions for persons with disabilities into inclusive day service providers. The implementation of this plan shall begin within a period not exceeding one year from this Act's entry into force, and it should be completed within a period not exceeding 10 years. Article 27 (d) puts an end to the establishment of residential institutions, as it stipulates that: "Licenses may not be granted for the establishment of new private residential institutions for persons with disabilities once the provisions of this Act have entered into force." These two provisions go hand in hand, as it would be illogical to pursue a strategy and operational plan for abandoning institutionalization while new institutions, which would be subject to conversion or closure, continue to be established. The Ten-Year National Strategy for Alternatives to Institutionalization[23] was launched in Jordan in November 2019 and was followed by the development of an implementation plan for the first pilot phase, covering 2020–2022. The pilot phase began with in-depth, reliable surveys and assessments of approximately 571 cases enrolled in government-run residential institutions spread across five centres. These were followed by a survey and assessment of cases enrolled in the 25 private residential institutions, accounting for approximately 900 people. Those working on the deinstitutionalization process in Jordan decided to start with government-run residential institutions to send a strong message to all, so that the body responsible for managing the residential institution system would be the first to comply with the provisions of the Act and work to transform and dismantle the system. A package of alternatives to institutionalization and support services has been developed. It includes training biological families and returning their family members to them, encouraging alternative families to foster, establishing inclusive day centres to strengthen independent living skills, and providing financial assistance to families in line with precise rules that are set out in regulations specifically drafted for that purpose. The Alternatives to Institutionalization and Support Services Regulation was issued in 2021 to establish the legal frameworks for such alternatives and services. It sets out the rules governing them and the conditions for licensing and managing them;[24]
2. Defining free and informed consent as fundamental for the promotion of the right to make one's own choices and decisions. The Jordanian Rights of Persons with Disabilities Act is one of the few pieces of legislation in the region that has adopted a clear definition of free and informed consent, presenting it as fundamental for the promotion of the right to make one's own choices and decisions. Article 2 of this Act defines such consent as: "The agreement of a person with a disability or his or her legal representative to any legal act, transaction or procedure initiated in relation to one of his or her rights or freedoms, after having been informed, in a way that he or she understands, of its content, consequences and effects." This definition places an obligation on judicial and executive authorities and service providers to investigate the wishes, preferences and inclinations of the person with a disability for any action or procedure to be taken in relation to him or her after he or she has been clearly informed of the nature of the action or procedure, the reasons for it, its consequences and the nature of the available alternatives. When this provision is applied to the issue of institutionalization and the right to live independently, the placement of a person in any residential or even day care institution without his or her free and informed consent is considered null and void, a flagrant violation of his or her rights, and a restriction of his or her liberty. This is explicitly stated in Article 27 (b), of the very same Rights of Persons with Disabilities Act: "Persons with disabilities may not be placed in day care or residential institutions without their free and informed consent, in accordance with the provisions of this Act";
3. In terms of community services that support independent living, the Jordanian Rights of Persons with Disabilities Act includes a package of such services, which the State is obliged to provide in local communities. Article 29 (c), (d), (e) and (f) read as follows: (c) "Promote independent living and self-reliance skills for persons with disabilities by providing physiotherapy, occupational therapy, psychological counselling, training in day-to-day life skills and motor skills, and behaviour modification programmes. (d) Promote the concept of personal companion services for persons with disabilities and encourage voluntary bodies to implement it as part of their programmes and activities. (e) Provide programmes to develop the social skills of families of persons with disabilities and train them on how to access available services and on healthcare methods, including the importance of early disability detection and intervention. (f) Provide physical, psychological and social rehabilitation services in areas close to the places of residence of persons with disabilities and their families, and facilitate their access to them."

From these provisions, it is clear that Jordanian legislation has set out the key foundations of independent living in terms of the incorporation of essential basic and support services in community environments. It highlights the role of organizations operating in those communities in the promotion of these services, especially the personal companion service. It firmly establishes the individual autonomy of persons with disabilities by respecting their choices and decisions and ensuring their free and informed consent to every action or procedure relating to them. Furthermore, it prohibits institutionalization and sets out a road map for putting an end to it. Therefore, the Jordanian legal model appears to be an example of best practice, provided that it is accompanied by clear and effective mechanisms for implementation. It is worth further developing and strengthening it, building on its successes, and studying and analysing any shortcomings it may have, so that solutions can be put in place to ensure that these shortcomings do not resurface or are at least addressed effectively.