GE.17-19008(E)Committee on the Rights of Persons with DisabilitiesGeneral comment No. 5 (2017) on living independently andbeing included in the communityI. Introduction1. Persons with disabilities have historically been denied their personal and individualchoice and control across all areas of their lives. Many have been presumed to be unable tolive independently in their self-chosen communities. Support is either unavailable or tied toparticular living arrangements, and community infrastructure is not universally designed.Resources are invested in institutions instead of in developing possibilities for persons withdisabilities to live independently in the community. This has led to abandonment,dependence on family, institutionalization, isolation and segregation.2. Article 19 of the Convention on the Rights of Persons with Disabilities recognizesthe equal right of all persons with disabilities to live independently and be included in thecommunity, with the freedom to choose and control their lives. The foundation of thearticle is the core human rights principle that all human beings are born equal in dignity andrights and all life is of equal worth.3. Article 19 emphasizes that persons with disabilities are subjects of rights and arerights holders. The general principles of the Convention (art. 3), particularly respect for theindividual’s inherent dignity, autonomy and independence (art. 3 (a)) and the full andeffective participation and inclusion in society (art. 3 (c)), are the foundation of the right tolive independently and be included in the community. Other principles enshrined in theConvention are also essential to interpret and apply article 19.4. Independent living and inclusive life in the community are ideas that historicallystemmed from persons with disabilities asserting control over the way they want to live bycreating empowering forms of support such as personal assistance and requesting thatcommunity facilities be in line with universal design principles.5. In the preamble to the Convention, States parties recognize that many persons withdisabilities live in poverty and stress the need to address the impact of poverty. The cost ofsocial exclusion is high as it perpetuates dependency and thus interference with individualfreedoms. Social exclusion also engenders stigma, segregation and discrimination, whichcan lead to violence, exploitation and abuse in addition to negative stereotypes that feedinto a cycle of marginalization of persons with disabilities. Policies and concrete plans ofaction for social inclusion of persons with disabilities, including through the promotion oftheir right to independent living (art. 19), represent a cost-effective mechanism to ensurethe enjoyment of rights, sustainable development and a reduction in poverty.6. The present general comment aims at assisting States parties in their implementationof article 19 and fulfilling their obligations under the Convention. It concerns primarily theobligation to ensure every individual’s enjoyment of the right to live independently and beincluded in the community, but it is also related to other provisions of the Convention. United NationsCRPD/C/GC/5Convention on the Rightsof Persons with DisabilitiesDistr.: General27 October 2017Original: English CRPD/C/GC/52Article 19 is one of the widest ranging and most intersectional articles of the Conventionand has to be considered as integral to the full implementation of the Convention.7. Article 19 entails civil and political as well as economic, social and cultural rightsand is an example of the interrelation, interdependence and indivisibility of all human rights.The right to live independently and be included in the community can only be realized if alleconomic, civil, social and cultural rights enshrined in this norm are fulfilled. Internationalhuman rights law imposes obligations which are of immediate effect and others which maybe realized progressively.1 Full realization also requires structural changes that may need tobe taken in stages, whether civil and political or social, economic and cultural rights are atstake.8. Article 19 reflects the diversity of cultural approaches to human living and ensuresthat its content is not biased towards certain cultural norms and values. Livingindependently and being included in the community is a basic concept of human livingaround the globe and is applied to the context of disability. It means exercising freedom ofchoice and control over decisions affecting one’s life with the maximum level of selfdetermination and interdependence within society. This right must be effectively realized indifferent economic, social, cultural and political contexts. The right to live independentlyand be included in the community refers to all persons with disabilities, irrespective of race;colour; descent; sex; pregnancy and maternity; civil, family or carer situation; genderidentity; sexual orientation; language; religion; political or other opinion; national, ethnic,indigenous or social origin; migrant, asylum-seeking or refugee status; belonging to anational minority, economic or property status; health status; genetic or other predispositiontowards illness; birth and age, or any other, status.9. The right contained in article 19 is deeply rooted within international human rightslaw. The Universal Declaration of Human Rights stresses in article 29 (1) theinterdependence of an individual’s personal development and the social aspect of being apart of the community: “Everyone has duties to the community in which alone the free andfull development of his personality is possible.” Article 19 has its roots in civil and politicalas well as economic, social and cultural rights: the right to liberty of movement andfreedom to choose one’s residence (article 12 of the International Covenant on Civil andPolitical Rights) and the right to an adequate standard of living, including adequate clothing,food and housing (article 11 of the International Covenant on Economic, Social andCultural Rights), and to basic communication rights form the basis for the right to liveindependently and be included in the community. Liberty of movement, an adequatestandard of living as well as the ability to understand and have one’s preferences, choicesand decisions understood form indispensable conditions for human dignity and the freedevelopment of a person.210. The Convention on the Elimination of All Forms of Discrimination against Womenemphasizes the equality of women and men and condemns discrimination against women inall its forms (art. 1). The Convention reaffirms the equality between women and menconcerning legal matters, including legal capacity and opportunities to exercise thatcapacity (art. 15 (2)). It also requests States parties to recognize the same rights with regardto the law relating to the movement of persons and the freedom to choose their residenceand domicile (art. 15 (4)).11. Article 9 (1) of the Convention on the Rights of the Child requires States parties to“ensure that a child shall not be separated from his or her parents against their will, exceptwhen competent authorities subject to judicial review determine, in accordance withapplicable law and procedures, that such separation is necessary for the best interest of thechild”. States parties to this Convention “shall render appropriate assistance to parents andlegal guardians in the performance of their child-rearing responsibilities”, as guaranteed byarticle 18 (2). In addition, article 20 (1) establishes that “[a] child temporarily or1 See Committee on Economic, Social and Cultural Rights , general comment No. 3 (1990) on thenature of States parties’ obligations 3, paras. 1-2.2 See Universal Declaration of Human Rights, art. 22; Human Rights Committee, general comment No.27 (1997) on freedom of movement, para. 1; Committee on Economic, Social and Cultural Rights,general comment No. 4 (1991) on adequate housing, para. 7.CRPD/C/GC/53permanently deprived of his or her family environment, or in whose own best interestscannot be allowed to remain in that environment, shall be entitled to special protection andassistance provided by the State”, and article 20 (2) that “States parties shall in accordancewith their national laws ensure alternative care for such a child”. Alternative care providedon the grounds of disability would be discriminatory.12. Article 23 (1) further establishes that all children with disabilities should enjoy a lifein dignity in conditions which ensure self-reliance and facilitate active participation in thecommunity. The Committee on the Rights of the Child has expressed its concern at the highnumber of children with disabilities placed in institutions and urged States parties, throughdeinstitutionalization programmes, to support their ability to live in their family, extendedfamily or foster care.313. Equality and non-discrimination are fundamental principles of international humanrights law and enshrined in all core human rights instruments. In its general comment No. 5(1994) on persons with disabilities, the Committee on Economic, Social and CulturalRights highlights that “segregation and isolation achieved through the imposition of socialbarriers” count as discrimination. It also stresses in relation to article 11 that the right to anadequate standard of living not only includes having equal access to adequate food,accessible housing and other basic material requirements, but also the availability ofsupport services and assistive devices and technologies fully respecting the human rights ofpersons with disabilities.14. Article 19 and the content of the present general comment must also guide andsupport the implementation of the New Urban Agenda adopted by the United NationsConference on Housing and Sustainable Urban Development (Habitat III) as an integralpart of 2030 Agenda for Sustainable Development and the Sustainable Development Goals.The New Urban Agenda advocates a vision of cities and human settlements where allpersons can enjoy equal rights and opportunities by promoting inclusive, just, safe, healthy,accessible, affordable, resilient and sustainable cities and human settlements. In connectionwith article 19 of the Convention, Sustainable Development Goal target 10.2,empowerment and promotion of social, economic and political inclusion for all, and target11.1, ensuring access to adequate, safe and affordable housing and affordable services forall, are of special importance.15. The Committee on the Rights of Persons with Disabilities has noted advancementsin implementing article 19 in the last decade. However, the Committee observes a gapbetween the goals and spirit of article 19 and the scope of its implementation. Some of theremaining barriers are the following: (a)Denial of legal capacity, either through formal laws and practices or de factoby substitute decision-making about living arrangements;(b)Inadequacy of social support and protection schemes for ensuring livingindependently within the community;(c)Inadequacy of legal frameworks and budget allocations aimed at providingpersonal assistance and individualized support;(d)Physical and regulatory institutionalization, including of children and forcedtreatment in all its forms;(e)Lack of deinstitutionalization strategies and plans and continued investmentsin institutional care settings;(f)Negativeattitudes,stigmaandstereotypes preventing persons withdisabilities from being included in the community and accessing available assistance;(g)Misconceptions about the right to living independently within the community; 3 See Committee on the Rights of the Child, general comment No. 9 (2006) on the rights of childrenwith disabilities, para. 47.CRPD/C/GC/54 (h)Lack of available, acceptable, affordable, accessible and adaptable servicesand facilities, such as transport, health care, schools, public spaces, housing, theatres,cinemas, goods and services and public buildings;(i)Lack of adequate monitoring mechanisms for ensuring the appropriateimplementation of article 19, including the participation of representative organizations ofpersons with disabilities;(j)Insufficient mainstreaming of disability in general budget allocations;(k)Inappropriatedecentralization,resultingindisparitiesbetweenlocal authorities and unequal chances of living independently within the community in a Stateparty.II. Normative content of article 19A. Definitions 16.In the present general comment the following definitions apply:(a)Independent living. Independent living/living independently means that individuals with disabilities are provided with all necessary means to enable them toexercise choice and control over their lives and make all decisions concerning their lives.Personal autonomy and self-determination are fundamental to independent living, includingaccess to transport, information, communication and personal assistance, place of residence,daily routine, habits, decent employment, personal relationships, clothing, nutrition,hygiene and health care, religious activities, cultural activities and sexual and reproductiverights. These activities are linked to the development of a person’s identity and personality:where we live and with whom, what we eat, whether we like to sleep in or go to bed late atnight, be inside or outdoors, have a tablecloth and candles on the table, have pets or listento music. Such actions and decisions constitute who we are. Independent living is anessential part of the individual’s autonomy and freedom and does not necessarily meanliving alone. It should also not be interpreted solely as the ability to carry out dailyactivities by oneself. Rather, it should be regarded as the freedom to choose and control, inline with the respect for inherent dignity and individual autonomy as enshrined in article 3(a) of the Convention. Independence as a form of personal autonomy means that the personwith disability is not deprived of the opportunity of choice and control regarding personallifestyle and daily activities;(b) Being included in the community. The right to be included in thecommunity relates to the principle of full and effective inclusion and participation insociety as enshrined in, among others, article 3 (c) of the Convention. It includes living afull social life and having access to all services offered to the public and to support servicesoffered to persons with disabilities to enable them to be fully included and participate in allspheres of social life. These services can relate, among others, to housing, transport,shopping, education, employment, recreational activities and all other facilities and servicesoffered to the public, including social media. The right also includes having access to allmeasures and events of political and cultural life in the community, among others, publicmeetings, sports events, cultural and religious festivals and any other activity in which theperson with disability wishes to participate;(c) Independent living arrangements. Both independent living and beingincluded in the community refer to life settings outside residential institutions of all kinds.It is not “just” about living in a particular building or setting; it is, first and foremost, aboutnot losing personal choice and autonomy as a result of the imposition of certain life andliving arrangements. Neither large-scale institutions with more than a hundred residents norsmaller group homes with five to eight individuals, nor even individual homes can be calledindependent living arrangements if they have other defining elements of institutions orinstitutionalization. Although institutionalized settings can differ in size, name and set-up,there are certain defining elements, such as obligatory sharing of assistants with others andno or limited influence over whom one has to accept assistance from; isolation andCRPD/C/GC/55segregation from independent life within the community; lack of control over day-to-daydecisions; lack of choice over whom to live with; rigidity of routine irrespective of personalwill and preferences; identical activities in the same place for a group of persons under acertain authority; a paternalistic approach in service provision; supervision of livingarrangements; and usually also a disproportion in the number of persons with disabilitiesliving in the same environment. Institutional settings may offer persons with disabilities acertain degree of choice and control; however, these choices are limited to specific areas oflife and do not change the segregating character of institutions. Policies ofdeinstitutionalization therefore require implementation of structural reforms which gobeyond the closure of institutional settings. Large or small group homes are especiallydangerous for children, for whom there is no substitute for the need to grow up with afamily. “Family-like” institutions are still institutions and are no substitute for care by afamily;(d) Personal assistance. Personal assistance refers to person-directed/“user”-ledhuman support available to a person with disability and is a tool for independent living.Although modes of personal assistance may vary, there are certain elements whichdistinguish it from other types of personal assistance, namely:(i) Funding for personal assistance must be provided on the basis ofpersonalized criteria and take into account human rights standards for decentemployment. The funding is to be controlled by and allocated to the person withdisability with the purpose of paying for any assistance required. It is based on anindividual needs assessment and upon the individual life circumstances.Individualized services must not result in a reduced budget and/or higher personalpayment;(ii) The service must be controlled by the person with disability, meaning that heor she can either contract the service from a variety of providers or act as anemployer. Persons with disabilities have the option to custom design their ownservice, i.e., design the service and decide by whom, how, when, where and in whatway the service is delivered and to instruct and direct service providers;(iii) Personal assistance is a one-to-one relationship. Personal assistants must berecruited, trained and supervised by the person granted personal assistance. Personalassistants should not be “shared” without the full and free consent of the persongranted personal assistance. Sharing of personal assistants will potentially limit andhinder the self-determined and spontaneous participation in the community;(iv) Self-management of service delivery. Persons with disabilities who requirepersonal assistance can freely choose their degree of personal control over servicedelivery according to their life circumstances and preferences. Even if theresponsibilities of “the employer” are contracted out, the person with disabilityalways remains at the centre of the decisions concerning the assistance, the one towhom any inquiries must be directed and whose individual preferences must berespected. The control of personal assistance can be exercised through supporteddecision-making.17. Providers of support service often wrongly describe their service using the terms“independent” or “community living” as well as “personal assistance”, though in practicesuch services do not fulfil the requirements posed by article 19. Mandatory “packagesolutions” which, among other things, link the availability of one particular service toanother, expect two or more persons to live together or can only be provided within specialliving arrangements are not in line with article 19. The concept of personal assistancewherein the person with disabilities does not have full self-determination and self-controlare to be considered not compliant with article 19. Persons with complex communicationrequirements, including those who use informal means of communication (i.e.,communication via non-representational means, including facial expression, body positionand vocalization) must be provided with appropriate supports enabling them to develop andconvey their directions, decisions, choices and/or preferences and have them acknowledgedand respected.CRPD/C/GC/56B. Article 19, chapeau18. Article 19 reaffirms non-discrimination and recognition of the equal right of personswith disabilities to live independently in the community. In order for the right to liveindependently, with choices equal to others, and be included in the community to berealized, States parties must take effective and appropriate measures to facilitate the fullenjoyment of the right and the full inclusion and participation of persons with disabilities inthe community.19. The article covers two concepts, which are only clearly mentioned in its heading: theright to independent living and the right to be included in the community. Whereas the rightto independent living refers to an individual dimension, as a right to emancipate oneselfwithout being denied access and opportunities, the right to be included in the communityentails a social dimension, i.e., the positive right to develop inclusive environments. Theright as enshrined in article 19 covers both concepts.20. Article 19 explicitly refers to all persons with disabilities. Neither the full or partialdeprivation of any “degree” of legal capacity nor the level of support required may beinvoked to deny or limit the right to independence and independent living in the communityto persons with disabilities.21. When persons with disabilities are assessed as requiring a high level of personalservice, States parties often consider institutions as the only solution, especially whenpersonal services are considered to be “too costly” or the person with disabilities isconsidered to be “unable” to live outside an institutional setting. Persons with intellectualdisabilities, especially those with complex communication requirements, among others, areoften assessed as being unable to live outside institutional settings. Such reasoning iscontrary to article 19, which extends the right to live independently and be included in thecommunity to all persons with disabilities, regardless of their level of intellectual capacity,self-functioning or support requirements.22. All persons with disabilities should be free to choose to be active and belong tocultures of their own choice, and they must have the same degree of choice and control overtheir lives as other members of the community. Independent living is not compatible withthe promotion of a “predefined” individual lifestyle. Young persons with disabilities shouldnot be forced to live in settings designed for elderly persons with disabilities and vice versa.23. Persons with disabilities of all genders are rights holders and enjoy equal protectionunder article 19. All appropriate measures should be taken to ensure the full development,advancement and empowerment of women. Lesbian, gay, bisexual, transgender, queer andintersex persons with disabilities must enjoy equal protection under article 19 and thereforerespect for their personal relationships. Furthermore, the right to live independently and beincluded in the community encompasses the protection of persons with disabilitiesbelonging to any age group, ethnic group, scheduled caste or linguistic and/or religiousminority, as well as migrant, asylum seeking and refugee persons.C. Article 19 (a)24. To choose and decide how, where and with whom to live is the central idea of theright to live independently and be included in the community. Individual choice, therefore,is not limited to the place of residence but includes all aspects of a person’s livingarrangements: the daily schedule and routine as well as the way of life and lifestyle of aperson, covering the private and public spheres, every day and in the long term.25. Often, persons with disabilities cannot exercise choice because there is a lack ofoptions to choose from. This is the case, for instance, where informal support by the familyis the only option, where support is unavailable outside of institutions, where housing isinaccessible or support is not provided in the community, and where support is providedonly within specified forms of residence such as group homes or institutions.26. Further, persons with disabilities might not be allowed to exercise their individualchoice owing to the lack of accessible information regarding the range of choices availableCRPD/C/GC/57and/or to legal restrictions deriving from guardianship laws and similar legal norms ordecisions which do not allow persons with disabilities to exercise their legal capacity. Evenif no formal laws are in place, other persons, such as families, caregivers or local authorities,sometimes exercise control and restrict an individual’s choices by acting as substitutedecision makers.27. Legal personality and legal agency are the bases for the realization of independentliving within the community for persons with disabilities. Article 19 is, therefore, linked tothe recognition and exercise of legal personality and legal capacity as enshrined in article12 of the Convention and further explained in the Committee’s general comment No. 1(2014) on equal recognition before the law. Further, it is linked to the absolute prohibitionof detention on the basis of disability as enshrined in article 14 and elaborated in therespective guidelines.4D. Article 19 (b)28. Individualized support services must be considered a right rather than a form ofmedical, social or charity care. For many persons with disabilities, access to a range ofindividualized support services is a precondition for independent living within thecommunity. Persons with disabilities have the right to choose services and service providersaccording to their individual requirements and personal preferences, and individualizedsupport should be flexible enough to adapt to the requirements of the “users” and not theother way around. This places an obligation on States parties to ensure that there aresufficient numbers of qualified specialists able to identify practical solutions to the barriersto living independently within the community in accordance with the requirements andpreferences of the individual.29. Subparagraph (b) specifies various individualized services which fall within thecategory of support services. They are not restricted to services inside the home, but mustalso be able to be extended to the spheres of employment, education and political andcultural participation; empowering parenthood and the ability to reach family relatives andothers; participation in political and cultural life; one’s leisure interests and activities; andtravel as well as recreation.30. While individualized support services may vary in name, type or kind according tothe cultural, economic and geographic specifics of the State party, all support services mustbe designed to support living within the community, preventing isolation and segregationfrom others, and must in actuality be suitable for this purpose. It is important that the aim ofthese support services be the realization of full inclusion within the community. Therefore,any institutional form of support services which segregates and limits personal autonomy isnot permitted by article 19 (b).31. It is also relevant to keep in mind that all support services have to be designed anddelivered in a mode which supports the overall purpose of the norm: full, individualized,self-chosen and effective inclusion and participation, and living independently.E. Article 19 (c)32. Services and facilities mentioned in this section of the article are non-disabilityspecific support services and facilities for the general population in the community. Theycover a wide range of services, such as housing, public libraries, hospitals, schools,transport, shops, markets, museums, the Internet, social media and similar facilities andservices. These must be available, universally accessible, acceptable and adaptable for allpersons with disabilities within the community.33. Accessibility of community facilities, goods and services, as well as the exercise ofthe right to inclusive, accessible employment, education and health care are essentialconditions for the inclusion and participation of persons with disabilities in the community.4 Guidelines on the right to liberty and security of persons with disabilities (A/72/55, annex).CRPD/C/GC/58Various deinstitutionalization programmes have shown that the closure of institutions,regardless of their size and the relocation of inhabitants in the community, in itself is notenough. Such reforms must be accompanied by comprehensive service and communitydevelopment programmes, including awareness programmes. Structural reforms designedto improve overall accessibility within the community may reduce the demand fordisability-specific services.34. In terms of material scope, article 19 covers access to safe and adequate housing,individual services and community facilities and services. Access to housing means havingthe option to live in the community on an equal basis with others. Article 19 is not properlyimplemented if housing is only provided in specifically designed areas and arranged in away that persons with disabilities have to live in the same building, complex orneighbourhood. Accessible housing providing accommodation to persons with disabilities,whether they live alone or as a part of a family, must be available in sufficient number,within all areas of the community, to provide the right of persons with disabilities to chooseand the possibility to do so. To this end, barrier-free new residential construction and thebarrier-free retrofitting of existing residential structures are required. In addition, housingmust be affordable to persons with disabilities.35. Support services must be available within safe physical and geographical reach to allpersons with disabilities living in urban or rural areas. They have to be affordable, takinginto account persons living on low incomes. They also need to be acceptable, which meansthat they must respect standard levels of quality and be gender, age and culturally sensitive.36. Individualized support services which do not allow for personal choice and selfcontrol are not providing for living independently within the community. Support servicesprovided as combined residential and support service (delivered as a combined “package”)are often offered to persons with disabilities on the premise of cost efficiency. However,while this premise itself can be rebutted in terms of economics, aspects of cost efficiencymust not override the core of the human right at stake. Persons with disabilities should notbe required by rule to share personal assistance and assistants; this should only be donewith their full and free consent. The possibility to choose is one of the three key elements ofthe right to live independently within the community.37. The right to equal support services corresponds with the duty to ensure theparticipation and involvement of persons with disabilities in processes related to facilitiesand services in the community, ensuring that they are responsive to specific requirements,are gender and age sensitive, and that they are available to allow for the spontaneousparticipation of persons with disabilities within the community. For children, the core of theright to live independently and be included in the community entails a right to grow up in afamily.F. Core elements38. The Committee finds it important to identify core elements of article 19 in order toensure that the realization of a standardized minimum support level sufficient to allow theexercise of the right to live independently and be included in the community is carried outby every State party. States parties should ensure that the core elements of article 19 arealways respected, particularly in times of financial or economic crisis. These core elementsare: (a)To ensure the right to legal capacity, in line with the Committee’s generalcomment No. 1, to decide where, with whom and how to live for all persons withdisabilities, irrespective of impairment;(b)To ensure non-discrimination in accessing housing, including the elements of both income and accessibility, and adopting mandatory building regulations that permitnew and renovated housing to become accessible;(c) To develop a concrete action plan for independent living for persons withdisabilities within the community, including taking steps towards facilitating formalCRPD/C/GC/59supports for independent living within the community so that informal support by, forexample, families is not the only option;(d) To develop, implement, monitor and sanction non-compliance withlegislation, plans and gui
