THE CONVENTION ON THE RIGHTS
OF PERSONS WITH DISABILITIES
The Right to Habilitation and Rehabilitation
Convention on the Rights of Persons with Disabilities
Article 26, Habilitation and rehabilitation
1. States Parties shall take effective and appropriate measures, including through peer support, to enable persons with disabilities to attain and maintain maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life. To that end, States Parties shall organize, strengthen and extend comprehensive habilitation and rehabilitation services and programmes, particularly in the areas of health, employment, education and social services, in such a way that these services and programmes:
(a) Begin at the earliest possible stage, and are based on the multidisciplinary assessment of individual needs and strengths;
(b) Support participation and inclusion in the community and all aspects of society, are voluntary, and are available to persons with disabilities as close as possible to their own communities, including in rural areas.
2. States Parties shall promote the development of initial and continuing training for professionals and staff working in habilitation and rehabilitation services.
3. States Parties shall promote the availability, knowledge and use of assistive devices and technologies, designed for persons with disabilities, as they relate to habilitation and rehabilitation.
The information contained in this chapter will enable participants to work towards the following objectives:
· Define the right to habilitation and rehabilitation.
· Explain the importance of the right to habilitation and rehabilitation for persons with disabilities.
· Understand the interrelationship between the right to habilitation and rehabilitation and other human rights.
· Understand the process of developing habilitation and rehabilitation plans.
· Identify ways in which the right to habilitation/rehabilitation has been promoted or denied.
· Understand the provisions on habilitation and rehabilitation in the Convention on the Rights of Persons with Disabilities (CRPD).
GETTING STARTED: THINKING ABOUT HABILITATION AND REHABILITATION
Habilitation refers to a process aimed at helping people gain certain new skills, abilities, and knowledge. The term rehabilitation refers to regaining skills, abilities, or knowledge that may have been lost or compromised as a result of acquiring a disability or due to a change in one’s disability or circumstances. The goals of habilitation and rehabilitation as defined in the CRPD are to “enable persons with disabilities to attain and maintain maximum independence, full physical, mental, social, and vocational ability, and full inclusion and participation in all aspects of life.” As with any other form of service or treatment, a rights-based approach to habilitation and rehabilitation requires the full participation and consent of persons with disabilities.
Habilitation and rehabilitation are often linked with health-related issues and consequently addressed along with policies related to the right to health. In reality, rehabilitation is much more complex and far-reaching. While health-related rehabilitation can be a vital aspect of strategies to achieve these goals, many other elements are equally important, including those related to employment, education, or simply life skills. To ensure that habilitation and rehabilitation are understood to include the full range of measures necessary to equip persons with disabilities to attain their goals, the CRPD addresses the subject in a separate article.
Eliminating the barriers persons with disabilities face in claiming their human rights requires a variety of strategies and tools. Many factors must combine to ensure that societies are as open to persons with disabilities as they are to other people (for example, accessible environments, specialized programmes and technologies, shifts in social and cultural attitudes, enforcement of non-discrimination laws, and knowledge of human rights principles). However, efforts that focus on adapting the social, legal, political, and physical environments are often inadequate to create equal opportunities for each person with a disability. An individual may require additional supports based on his or her unique circumstances and disability, such as assistive technologies, specific training, education, or skills development.
Unlike reasonable accommodation, habilitation and rehabilitation focus on equipping the individual with the specific knowledge, tools, or resources that he or she requires rather than ensuring that the general environment, program, practice, or job includes the features needed for an individual with a disability to succeed on an equal basis with others. For instance, an employer may be required to provide an accessible workspace as a reasonable accommodation for an employee who uses a wheelchair; however, the employer is not required to provide a wheelchair to the employee. A bank should have information on its services in accessible formats such as Braille, but the bank is not responsible for teaching a person with a visual impairment how to read using Braille. Responsibility is not always clear, however. For example if an office purchases new voice-recognition software as a reasonable accommodation for a person who is unable to use a standard computer keyboard, it would seem logical that the employer would teach that employee how to use the new software as part of the reasonable accommodation.
Habilitation and rehabilitation are crucial to ensuring that persons with disabilities are able to access all of their human rights. Without adequate habilitation and rehabilitation services, persons with disabilities may not be able to work, go to school, or participate in cultural, sports, or leisure activities. At the same time, barriers to other human rights can prevent persons with disabilities from claiming the right to habilitation and rehabilitation. For example, services may be available, but if no accessible transportation exists, many persons with disabilities will be prevented from receiving the benefit of these services. If information about habilitation and rehabilitation services is not available in accessible formats, persons with certain disabilities may never know that they exist. These examples demonstrate how the right to habilitation and rehabilitation and other human rights are indivisible, interdependent, and interrelated.
While persons with disabilities have the same rights as every other person, the ways people achieve their life goals –how they learn, how they communicate, how they interact with the physical environment, how they interact socially, and many other factors –differ for a variety of reasons, including disability. Habilitation and rehabilitation are processes designed to provide individualized strategies, tools, and resources to assist persons with disabilities in achieving the objectives they have set for themselves. These objectives may be as simple as taking the bus across town or as complex as becoming a world-famous rocket scientist. The important thing to remember is that ensuring access to habilitation and rehabilitation has been identified in human rights law as an obligation for States to enable persons with disabilities to claim their human rights.
Who May Benefit From Rehabilitation?
Persons with disabilities are just one group that has been identified as entitled to rehabilitation programmes and services. International law and policy has long recognized the need for specific populations to have access to rehabilitation in order to successfully integrate or reintegrate in society and lead independent, productive, and happy lives.
Child Soldiers and Children Affected by War
The Optional Protocol to the Convention on the Rights of the Child (CRC) on the Involvement of Children in Armed Conflict calls for “the physical and psychosocial rehabilitation and social reintegration of children who are victims of armed conflict…”
Article 14 of the Convention Against Torture (CAT) states that “Each State Party shall ensure in its legal system that the victim of an act of torture obtains redress and has an enforceable right to fair and adequate compensation, including the means for as full rehabilitation as possible.” The reporting guidelines for countries implementing the CAT require information on any measures to assist in the victim’s rehabilitation and reintegration into the community.
Land Mine Survivors
Article 6.3 of the Convention on the Prohibition of the Use, Stockpiling, Production and Transfer of Anti-Personnel Mines and on their Destruction calls on States to “provide assistance for the care and rehabilitation, and social and economic reintegration, of mine victims and for mine awareness programmes.”
In response to the report of the Special Rapporteur on Torture and other cruel, inhuman or degrading treatment or punishment, the UN General Assembly adopted a resolution in 2007 that calls on national legal systems to ensure that torture victims “receive appropriate social and medical rehabilitation.” See: UN General Assembly Resolution 61/153, UN doc. A/RES/61/153: http://daccess-dds-ny.un.org/doc/UNDOC/GEN/N06/503/61/PDF/N0650361.pdf?OpenElement
Rehabilitation is sometimes discussed in reference to whole countries, as well as to our earth’s environment after natural disasters or armed conflict. Rehabilitation is for anything or anyone who can benefit from assistance to ensure optimal functioning and realizing his, her, or its full potential.
WHAT DOES HUMAN RIGHTS LAW SAY ABOUT HABILITATION AND REHABILITATION?
The right to rehabilitation is addressed in various international instruments. Article 23 of the Convention on the Rights of the Child (CRC) calls on States Parties to ensure “effective access” of children with disabilities to:
…education, training, health care services, rehabilitation services, preparation for employment and recreation opportunities in a manner conducive to the child’s achieving the fullest possible social integration and individual development, including his or her cultural and spiritual development.
The International Labour Organization (ILO) treaty Vocational Rehabilitation and Employment (Disabled Persons) Convention, adopted in 1983, calls on members to implement national policies on vocational rehabilitation to ensure that “appropriate vocational rehabilitation measures are made available to all categories of disabled persons.” This Convention states that the purpose of vocational rehabilitation is “to enable a disabled person to secure, retain and advance in suitable employment and thereby to further such person’s integration or reintegration into society.” Although the text does not provide detailed guidance on what vocational rehabilitation should include, it recognizes that the concept of rehabilitation had evolved significantly since the development of previous ILO standards in 1955 and refers to the need for adoption of new standards based on the UN World Programme of Action Concerning Disabled Persons. In that non-binding instrument, rehabilitation was recognized to include the following range of services:
· Early detection, diagnosis, and intervention;
· Medical care and treatment;
· Social, psychological, and other types of counselling and assistance;
· Training in self-care activities, including mobility, communication, and daily living skills, with special provisions as needed (for example, for persons with hearing impairment or visual impairment);
· Provision of technical and mobility aids and other devices;
· Specialized education services;
· Vocational rehabilitation services (for example, vocational guidance, vocational training, placement in open or sheltered employment); and
The CRPD is the first instrument to mention both habilitation and rehabilitation. Article 26, Habilitation and rehabilitation, calls on States to “organize, strengthen and extend comprehensive habilitation and rehabilitation services and programmes, particularly in the areas of health, employment, education and social services.” The CRPD stresses that habilitation and rehabilitation should be multi-disciplinary and individualized to take into account the needs and strengths of the person and that services should be available to people as close to their own communities as possible. It recognizes the need for ongoing training of habilitation and rehabilitation professionals and the important role that assistive technologies and devices play in habilitation and rehabilitation processes.
The CRPD also mentions rehabilitation in the articles on work, health, and freedom from exploitation, violence, and abuse, though no specifics are offered as to what rehabilitation entails in those contexts.
The principle of participation by persons with disabilities in the design, development, and implementation of habilitation and rehabilitation programmes is implicit in the fundamental concepts of participation, autonomy, and decision-making included in CRPD Article 3, General principles. The principles contained in this article are considered foundational, which means they inform and apply to all of the human rights throughout the Convention. The first of the General principles listed in Article 3(a) is:
Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons;
Respecting the freedom of choice and the independence of persons with disabilities is an essential component of ensuring the right to habilitation and rehabilitation.
The Duty to Respect, Protect, and Fulfil Obligations Relating to Habilitation and Rehabilitation
Taken as a whole, States’ obligations relating to habilitation and rehabilitation include:
1. Obligation to respect: States must refrain from denying or limiting equal access to rehabilitation services for persons with disabilities.
Example: The State adopts a law that allows equal access to rehabilitation and habilitation services for war veterans with disabilities.
2. Obligation to protect: States must take all appropriate measures to ensure that third parties, such as rehabilitation professionals, service provider organizations, or others do not create barriers to rehabilitation services for persons with disabilities.
Example: The State takes measures to ensure that providers do not discriminate against persons with disabilities living in poverty in the provision of rehabilitation services.
Example: The State adopts specific measures to ensure that persons with disabilities living in rural areas are provided with information about rehabilitation services.
3. Obligation to fulfil: States must be proactive in their adoption and implementation of measures to give effect to the principles of equal access and non-discrimination in respect of rehabilitation services.
Example: The State provides disability training to rehabilitation providers to help them understand how to effectively accommodate consumers with disabilities.
Example: The State provides information on rehabilitation services in accessible formats for persons with disabilities, such as plain language for persons with intellectual disabilities.
In sum, international human rights law strongly supports the right of persons with disabilities to have equal and effective access to rehabilitation services. The enjoyment of this right facilitates the enjoyment of other rights by persons with disabilities.
Peer Support in Habilitation and Rehabilitation
In the early 1960s, two students with quadriplegia were admitted to the University of California at Berkeley, but instead of living in the dormitory with other students, they were required to live at the university hospital. As more students like them were admitted, they formed a group and called themselves “The Rolling Quads.” The Rolling Quads questioned their living situation. Why were they forced to live in a hospital? There were many answers to this question. Dormitories on campus were not accessible to people using wheelchairs. University administrators expressed concern about students with disabilities needing medical care. The Rolling Quads used personal assistants or attendants, but there was no provision for personal assistants to share dormitory space. The Rolling Quads also brought up other topics. For example, they could not move freely around the city of Berkeley. There were no curb cuts to go from one sidewalk to another. No accessible transportation existed. If a student’s wheelchair broke down, there was no place to go to get it fixed.
The Rolling Quads decided to work together to advocate for their needs. As a result of their advocacy, the University opened the first Disabled Students Office. After a few years, many of the Rolling Quads were ready to graduate. To plan for the future they devised a course called “independent living,” in which they discussed how to improve conditions for persons with disabilities in the city of Berkeley, just as they had done with the University. Eventually, this group opened the first Center for Independent Living and helped to start a worldwide movement.
The Berkeley students acted on their own initiative, but they were not alone in their actions to champion disability rights. Similar groups were meeting all around the world, and these groups began communicating with each other. These peer groups came to believe that they knew more about life with a disability than the “experts.” They decided that it was themselves who were really the experts about their own lives. This viewpoint changed their way of looking at the world. If persons with disabilities were their own experts, then they were the ones most qualified to teach about their experiences and counsel other persons with disabilities about living with a disability. They began to call themselves peer counsellors.
The Rolling Quads took it upon themselves to identify their own goals for their lives at the University and beyond and made plans for how to achieve these goals. They helped one another through their shared experience. They knew what resources they needed and how to teach others to access those same resources. They took control of their own habilitation and rehabilitation.
Source: Adapted from Steve Brown, “Peer Counseling: Advocacy-Oriented Peer Support Part One,” Independent Living Research Utilization (1999): http://www.ilru.org/html/publications/readings_in_IL/peer1.html
HABILITATION AND REHABILITATION FOR PERSONS WITH INTELLECTUAL DISABILITIES AND PSYCHOSOCIAL DISABILITIES
Persons with intellectual or psychosocial disabilities are particularly vulnerable to human rights violations committed in the name of “rehabilitation.” The objective of habilitation and rehabilitation under the CRPD is to “enable persons with disabilities to attain and maintain maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life.” These efforts must always be based on the goals and preferences expressed by the person who is receiving the rehabilitation service.
Persons with intellectual or psychosocial disabilities are often subjected to programmes and therapies intended not to help them achieve what they want, but rather to change them in a way that the person may not wish to be changed. Persons with intellectual disabilities or psychosocial disabilities are assumed not to know “what is good for them” or to be incapable of defining reasonable goals for themselves. In these cases, doctors, family members, or others often employ rehabilitation approaches that further their own objectives and may violate the wishes of the person with an intellectual disability. Such “rehabilitation” violates fundamental human rights principles such as autonomy, freedom of expression, participation and inclusion, non-discrimination, and personal integrity.
USEFUL RESOURCES ON THE RIGHT TO HABILITATION AND REHABILITATION
· Disabled Peoples' International: Community Based Rehabilitation (CBR) webpage: http://www.dpi.org/lang-en/resources/topics_list.php?topic=3
o Global membership organization of persons with disabilities web resources on CBR.
· International Labour Organization Convention 159, Vocational Rehabilitation and Employment (Disabled Persons) Convention (1983): http://www.ilo.org/ilolex/english/convdisp1.htm
o Legally binding convention concerning vocational rehabilitation and employment for persons with disabilities.
· International Labour Organization, Vocational Rehabilitation and Employment (Disabled Persons) Recommendation No. 168 (1983): http://www.ilo.org/ilolex/english/recdisp1.htm
o Recommendations supplementing Convention 159 to support and guide implementation.
· International Labour Office, World Health Organization, and UN Educational, Scientific and Cultural Organization, “CBR - A Strategy for Rehabilitation, Equalization of Opportunities, Poverty Reduction and Social Inclusion of People with Disabilities, Joint Position Paper” (2004): http://whqlibdoc.who.int/publications/2004/9241592389_eng.pdf
o Paper laying out CBR strategy focused on rehabilitation within the framework of equalization of opportunities and social inclusion.
· National Council on Independent Living: http://www.ncil.org/
o US-based national organization focused on supporting independent living for persons with disabilities.
· Rehabilitation International: http://www.riglobal.org/
o Global disabled people’s organization focusing on the rights and inclusion of persons with disabilities, with a focus on access to rehabilitation and general accessibility.
· World Health Organization, Community Based Rehabilitation Guidelines (2011): http://www.who.int/disabilities/cbr/guidelines/en/index.html
o CBR guidelines developed in process of global consultation.
· World Health Organization Disability and Rehabilitation, Action Plan 2006-2011: http://www.who.int/disabilities/ publications/dar_action_plan_2006to2011.pdf
· World Health Organization & World Bank, World Report on Disability (2011): http://www.who.int/disabilities/publications/dar_action_plan_2006to2011.pdf