PART 2:
THE CONVENTION ON THE RIGHTS
OF PERSONS WITH DISABILITIES
Chapter 11:
Living Independently and
with Dignity in the Community
Convention on the Rights of Persons with DisabilitiesArticle 19, Living independently and being included in the community
States Parties to this Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:
(a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;
(b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;
(c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.Article 28, Adequate standard of living and social protection
1. States Parties recognize the right of persons with disabilities to an adequate standard of living for themselves and their families, including adequate food, clothing and housing, and to the continuous improvement of living conditions, and shall take appropriate steps to safeguard and promote the realization of this right without discrimination on the basis of disability.
2. States Parties recognize the right of persons with disabilities to social protection and to the enjoyment of that right without discrimination on the basis of disability, and shall take appropriate steps to safeguard and promote the realization of this right, including measures:(a) To ensure equal access by persons with disabilities to clean water services, and to ensure access to appropriate and affordable services, devices and other assistance for disability-related needs;
(b) To ensure access by persons with disabilities, in particular women and girls with disabilities and older persons with disabilities, to social protection programmes and poverty reduction programmes;
(c) To ensure access by persons with disabilities and their families living in situations of poverty to assistance from the State with disability-related expenses, including adequate training, counselling, financial assistance and respite care;
(d) To ensure access by persons with disabilities to public housing programmes;
(e) To ensure equal access by persons with disabilities to retirement benefits and programmes.Article 12, Equal recognition before the law
1. States Parties reaffirm that persons with disabilities have the right to recognition everywhere as persons before the law.
2. States Parties shall recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life.
3. States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity.
4. States Parties shall ensure that all measures that relate to the exercise of legal capacity provide for appropriate and effective safeguards to prevent abuse in accordance with international human rights law. Such safeguards shall ensure that measures relating to the exercise of legal capacity respect the rights, will and preferences of the person, are free of conflict of interest and undue influence, are proportional and tailored to the person’s circumstances, apply for the shortest time possible and are subject to regular review by a competent, independent and impartial authority or judicial body. The safeguards shall be proportional to the degree to which such measures affect the person’s rights and interests.
5. Subject to the provisions of this article, States Parties shall take all appropriate and effective measures to ensure the equal right of persons with disabilities to own or inherit property, to control their own financial affairs and to have equal access to bank loans, mortgages and other forms of financial credit, and shall ensure that persons with disabilities are not arbitrarily deprived of their property.
OBJECTIVES
The information contained in this chapter will enable participants to work towards the following objectives:
· Define the right to live independently and with dignity in the community;
· Explain the importance of living independently and with dignity in the community for persons with disabilities;
· Understand the interrelationship between living independently and with dignity in the community and other human rights;
· Identify ways in which the rights of persons with disabilities to live independently and with dignity in the community have been promoted or denied; and
· Understand the provisions on living independently and with dignity in the community in the Convention on the Rights of Persons with Disabilities (CRPD).
GETTING STARTED: THINKING ABOUT LIVING INDEPENDENTLY AND WITH DIGNITY IN THE COMMUNITY
What does the right to live independently mean? Few people in the world live completely by themselves without any contact with other people. All of us rely to some extent on other people, to provide us with advice, friendship, goods, services, and a variety of other kinds of support. What then does “living independently” mean if not living solely by yourself? The right to live independently means the right to choose how you live, where you live, with whom you live, and to what degree you wish to interact with your community. It also means having access to any support you might need to realize those choices and to achieve an adequate standard of living.
A critical component of the right to live independently in a manner that respects inherent human dignity is the opportunity to make one’s own decisions and to have those decisions be respected and acted upon. Many persons with disabilities have been denied this right, even with respect to the most basic of decisions, such as what to wear or eat or drink. In some cases, national legislation has expressly barred persons with disabilities (especially persons with intellectual or psychosocial disabilities) from making their own decisions by depriving them of the legal capacity needed to do so. In other instances, people have ignored the decisions of family members or friends with disabilities because they do not believe the person has the capacity to make “sensible” decisions.
Information and communication barriers can also negatively impact the ability of persons with disabilities to make decisions. For example, the lack of accessible information can deprive persons with disabilities of the information they need to reach a decision. Additionally, the lack of communication accommodations may make it difficult for persons with disabilities to express themselves and make their opinions and decisions understood.
Violations of other human rights can create barriers to the ability of persons with disabilities to live independently and with dignity in the community. For example:
· Disability-based discrimination in employment not only violates the right to work, but may also deprive persons with disabilities of the means to earn an income to support themselves;
· The lack of accessible transportation not only deprives persons with disabilities of the right to liberty of movement, but also harms their ability to access work, education, healthcare, and shops, as well as to interact fully with the community;
· Services such as medical care or rehabilitation that are available to others locally in a general hospital or on an outpatient basis may only be available to persons with disabilities in an institutional setting;
· The lack of an adequate standard of living may force persons with disabilities to live in a segregated institutional setting or with family members merely for survival reasons, such as access to food and shelter;
· The lack of accessible housing may greatly reduce the choices available to persons with disabilities who want to live and work in a particular community; and
· Negative and discriminatory attitudes towards persons with disabilities may make persons with disabilities feel uncomfortable or unsafe among other community members and in turn encourage them to avoid such interactions. Such attitudes may even encourage families to hide their family members with disabilities from the community.
Violations of the right to live independently in the community also frequently lead to violations of other human rights. For example:
· Forcing persons with disabilities to live in segregated settings deprives them of the opportunity to participate fully in the social, cultural, and political life of their community;
· Children with disabilities who must live apart from their families are deprived of the opportunity to grow up in a family setting and often are denied quality inclusive education;
· Institutional settings can often expose persons with disabilities to a higher risk of violence, sexual abuse, and even death, especially women and girls with disabilities and persons with intellectual disabilities; and
· Segregated settings may also deprive persons with disabilities of the opportunity to exercise their right to marry and have a family of their own.
These examples illustrate that human rights are indivisible, interdependent, and interrelated. Above all, violations of the right to live independently in the community disrespects the basic dignity of persons with disabilities that is inherent in all human beings.
Examples of Barriers to Living Independently and with Dignity in the Community· Physical barriers to places of work, shops, health care facilities, housing, and public buildings;
· Lack of accessible transportation to places of work, shops, health care facilities, and public buildings;
· Legislation, regulations, policies, or practices that force persons with disabilities to live in segregated and institutional settings against their will;
· Lack of accessible information about services to support living independently and about what the rights and responsibilities of persons with disabilities are with respect to accessing those services and supports;
· Lack of accommodations to facilitate communication by persons with disabilities, especially persons who are blind, deaf, or deafblind; persons with intellectual disabilities; and persons with learning disabilities; and
· Negative attitudes and stigma in society about the ability of persons with disabilities to live where and with whom they choose and to make decisions for themselves.
WHAT DOES HUMAN RIGHTS LAW SAY ABOUT LIVING INDEPENDENTLY AND WITH DIGNITY IN THE COMMUNITY?
A number of human rights instruments are relevant to the right to live independently and with dignity in the community. For example, the Universal Declaration of Human Rights (UDHR) discusses the right to an adequate standard of living (Article 25) and the right to recognition before the law (Article 6), which is relevant to the ability to make one’s own decisions. The International Covenant on Civil and Political Rights (ICCPR) also contains provisions relevant to decision-making, such as Article 16, which recognizes everyone as equal before the law, and Article 17, which recognizes the right of everyone to freedom of expression.
The International Covenant on Economic, Social and Cultural Rights (ICESCR) contains provisions in Article 11 that relate to the right of everyone to an adequate standard of living, “including adequate food, clothing and housing, and to the continuous improvement of living conditions.” General Comment No. 5 of the Committee on Economic, Social and Cultural Rights, which monitors implementation of the ICESCR, states that governments must adopt policies “to enable persons with disabilities to live an integrated, self-determined and independent life,” and that “[d]isability policies should ensure the access of [persons with disabilities] to all community services.”
The Convention on the Rights of the Child (CRC) emphasizes throughout its provisions the need to support the ability of children to live with their families where it is in the best interests of the child to do so. Further, Article 23 sets out the right of children with disabilities to “participate in the community.” The Committee on the Rights of the Child has further encouraged States to:
…make every effort to provide assistance for children with disabilities and support services for their families, to the maximum extent possible on an out-patient or community basis, thereby avoiding removal of children with disabilities from their families for placement in institutions.
The CRPD expands upon the issues addressed in earlier human rights documents and helps to clarify how States can respect, protect, and fulfil the right to live independently in the community. Because of the indivisible, interdependent, and interrelated nature of human rights, many articles in the CRPD are relevant to the enjoyment of this right. However, Article 19, Living independently and being included in the community; Article 28, Adequate standard of living and social protection; and Article 12, Equal recognition before the law, are especially important to issues of living independently and with dignity in the community.
CRPD Article 19, Living independently and being included in the community, explicitly addresses the right of persons with disabilities to live independently and be included in the community. It emphasizes the right of persons with disabilities to “have choices equal to others,” including the opportunity to choose where and with whom they live and to not be forced into a particular living arrangement. Article 19 requires States to ensure that persons with disabilities have access to the kinds of supports and services they may need to enable them to live independently and avoid segregation and isolation from the community. Such supports might include personal assistance and/or other in-home or community services. In addition, Article 19 requires that community services and facilities that are available to the wider population are also available on an equal basis to persons with disabilities and that those services and facilities are also responsive to the needs of persons with disabilities.
The Office of the High Commissioner for Human Rights on Article 19 of the CRPDThe provisions of article 19 of the Convention carry far-reaching implications for all forms of institutionalized care of persons with disabilities. The recognition of the right of persons with disabilities to independent living and community inclusion requires the shift of government policies away from institutions towards in-home, residential, and other community support services. The key element of any intervention aimed at giving effect to the right to independent living and community inclusion is the explicit legal recognition of the right of persons with disabilities to determine where and with whom to live. This recognition should also openly reflect the unlawfulness of arrangements for residential care made against the wishes of a person with disabilities.
De-institutionalization is necessary but not sufficient to achieve the goal of independent living. In most cases, a national strategy that integrates interventions in the area of social services, health, housing and employment, at a very minimum, will be required. For the effective implementation of such strategies it is necessary that the independent living principle be rooted in a legislative framework which clearly establishes it as a legal right and in turn places duties on authorities and service providers, while also allowing for recourse in case of violation. Such legislative frameworks shall include the recognition of the right to access the support services required to enable independent living and inclusion in community life, and the guarantee that independent living support should be provided and arranged on the basis of the individual’s own choices and aspirations, in line with the principles of the CRPD.
Source: Office of the High Commissioner for Human Rights, “Thematic Study by the Office of the United Nations High Commissioner for Human Rights on enhancing awareness and understanding of the Convention on the Rights of Persons with Disabilities,” paras. 50 & 51 (26 January 2009): http://www.ohchr.org/EN/HRBodies/CRPD/Pages/DayGeneralDiscussion21102009.aspx
Article 28 of the CRPD addresses the right to an adequate standard of living and social protection. It recognizes the right of persons with disabilities to have an adequate standard of living, “including adequate food, clothing and housing, and to the continuous improvement of living conditions,” and to be able to enjoy this right without discrimination on the basis of disability. States must also ensure that persons with disabilities enjoy social protection without discrimination on the basis of disability. For example, persons with disabilities need to be assured equal access to clean water, social protection and poverty reduction programmes, public housing, and retirement benefits and programmes.
As discussed in detail below, Article 12, Equal recognition before the law, is perhaps most fundamental to facilitating the right to live independently and in the community as it recognizes the legal capacity of persons with disabilities and the right to exercise that capacity, with support where needed, in order to live a self-determined life.
The CRPD Committee on Article 12Concluding Observations of the CRPD Committee on Article 12 to Tunisia in response to its Report
The Committee is concerned that no measures have been undertaken to replace substitute decision-making by supported decision-making in the exercise of legal capacity.
The Committee recommends that the State party review the laws allowing for guardianship and trusteeship, and take action to develop laws and policies to replace regimes of substitute decision-making by supported decision-making. It further recommends that training be provided on this issue to all relevant public officials and other stakeholders.
Source: Committee on the Rights of Persons with Disabilities, “Consideration of Reports submitted by States under Article 35, Concluding Observations - Tunisia” (April 11, 2011): http://www.ohchr.org/EN/HRBodies/CRPD/Pages/Session5.aspx
Article 12 questions posed by the CRPD Committee to Spain on the submission of its Report1. Please provide data on how many persons with disabilities have been put under guardianship to enable them to exercise legal capacity and on the number of rulings modifying the capacity to act, if any.
2. Please explain how it is ensured that guardianship is exercised to the benefit of the ward, in view of the absence of explicit safeguards in current legislation against undue influence or conflict of interest.
3. Please provide information on the measures planned or taken to replace substitute decision-making (guardianship) with supported decision-making in the exercise of legal capacity, in accordance with article 12 of the Convention.
Source: Committee on the Rights of Persons with Disabilities, “List of issues to be taken up in connection with the consideration of the initial report of Spain” (20 June 2011): http://www2.ohchr.org/SPdocs/CRPD/5thsession/CRPD.C.ESP.Q.1_en.doc
The Duty to Respect, Protect, and Fulfil Obligations Relating to the Rights of Persons with Disabilities to Live Independently and with Dignity in the Community
States’ obligations with regard to the right of persons with disabilities to live independently and with dignity in the community include:
1. Obligation to respect: States must respect the right to work by ensuring that State actors, such as government officials, do not interfere with the exercise and enjoyment of the right to live independently and in the community by persons with disabilities.
Example: The State reviews its laws and policies to ensure that a person with a disability is not required to live in an institution in order to access rehabilitation or educational services.
Example: The State enacts a law to ensure that a person with a disability is not barred from living in a public housing complex.
2. Obligation to protect: States must ensure that non-State actors, such as businesses and families, do not interfere with the exercise and enjoyment of the right to live independently.
Example: The State monitors supported decision-making procedures in health care provision.
3. Obligation to fulfil: States must take positive action to ensure that persons with disabilities are able to exercise the right to live independently.
Example: The State reallocates funding from segregated institutional settings to community-based living options that provide adequate support for persons with disabilities to live independently in their community.
In sum, international human rights law strongly supports the right of persons with disabilities to live independently and with dignity in the community. The enjoyment of these rights contributes to the enjoyment of other human rights by persons with disabilities.
LEGAL CAPACITY AND SUPPORTED DECISION-MAKING TO LIVE INDEPENDENTLY
CRPD Article 12, Equal recognition before the law, addresses the right to equal recognition before the law and confirms that persons with disabilities “enjoy legal capacity on an equal basis with others in all aspects of life.” Historically, many persons with disabilities have been subjected to laws and practices that deprived them of their legal capacity and consequently of their autonomy and freedom to choose how and where to live their lives.Of particular concern is the fact that persons with disabilities are often subjected to the decision-making of other people. Even when substitute decision-makers act in good faith and with good intentions, such practices still deny persons with disabilities the right to make their own decisions. Article 12 seeks to correct this approach by recognizing the legal capacity of persons with disabilities and providing measures to support their right to exercise their legal capacity. Some persons with disabilities require no support in making decisions while others may need intensive support. Regardless of the level of support needed, States must ensure that this support is not abusive and does not infringe the person’s human rights.
States must ensure the equal right of persons with disabilities to “own or inherit property, to control their own financial affairs and to have equal access to bank loans, mortgages and other forms of financial credit,” as well as to not be arbitrarily deprived of their property. These measures are important because living independently in the community can be difficult to achieve without the ability to access and control financial and property resources.
Supported Decision-making for Persons with Disabilities
Increasingly, countries around the world are moving away from substituted decision-making models, where other people make decisions on behalf of persons with disabilities, to supported decision-making, where persons with disabilities themselves make their own decisions, utilizing the support of others if and when they request it. This approach attempts to respect the inherent dignity of persons with disabilities and avoid paternalism. Though potentially useful for anyone requiring help to make decisions, it is particularly relevant for persons with psychosocial or intellectual disabilities, who historically have been forced to comply with substituted decision-making.
Although there are no internationally agreed upon standards or guidelines regarding supported decision-making, the following may be helpful for those interested in ensuring that supported decision-making activities respect the rights of persons with disabilities:
· Persons with disabilities have the right to be respected for their inherent decision-making abilities;
· Persons with disabilities have the right to develop authentic decision-making voices;
· Persons with disabilities have the right to receive support where they request it;
· Persons with disabilities have the right to genuine choices and options and to make decisions based on those options; and
· Persons with disabilities have the right to be able to make mistakes.
USEFUL RESOURCES ON LIVING INDEPENDENTLY AND WITH DIGNITY IN THE COMMUNITY
· Access Living Center for Independent Living: http://www.accessliving.orgo Useful resources on independent living.
· Canadian Association of Independent Living Centres (CAILC): http://www.cailc.ca
o Useful resources on independent living.
· Committee on the Rights of Persons with Disabilities, Day of General Discussion on “Article 12 of the CRPD – The right to equal recognition before the law” (21 October 2009): http://www.ohchr.org/EN/HRBodies/CRPD/Pages/DayGeneralDiscussion21102009.aspx
o Contains numerous resources on Article 12 and links to papers presented at the Day of Discussion.
· Committee on the Rights of the Child, “Report on the twenty-fifth session,” Sept./Oct. 2000 CRC/C/100, paras. 688.17, 20-22, 24-25: http://www.unhcr.org/home/RSDCOI/3f4782b74.pdf
· Rockland Independent Living Center, “The Independent Living Philosophy: Ten Principles”: http://www.rilc.org/principles.htm
o Useful resources on independent living.
· Office of the High Commissioner for Human Rights, “OHCHR Background Conference Document on Legal Capacity”, 6th session of the Ad Hoc Committee, on a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities (1-12 August 2005): http://www2.ohchr.org/SPdocs/CRPD/DGD21102009/OHCHR_BP_Legal_Capacity.doc
o Overview of legal approaches to legal capacity.
· Planned Lifetime Advocacy Network, “Supported Decision-making”: http://www.plan.ca/Programmes_Decisions.php
o Useful resources on supported decision-making.
