Daily Summary related to Draft Article 15
RIGHT TO LIVE IN AND BE PART OF THE COMMUNITY
Prepared by Landmine Survivors Network

Volume 3, #5
January 9, 2004

Morning Session
Commenced: 10:30 AM
Adjourned: 1:04 PM

RIGHT TO LIVE IN AND BE PART OF THE COMMUNITY

Disabled People International-Africa (DPI Africa) proposed additional language to Paragraph 2 (a) that prohibited exiling PWD from the community.

World Federation of the Deaf Blind (WFDB) underlined the importance of this right article for the deaf blind because of the perception that this particular group is not able to shoulder the responsibilities that come with this, like owning a home.

IID called for this article take a decisive step to eradicate institutionalization as a legitimate option for PWD. It should ensure that PWD are not isolated from other human beings and proposed that the article make reference to the need for education on socio-cultural changes necessary so that communities move forward and eliminate practices that might prohibit participation of PWD in the community.

Japan proposed separating Paragraphs 1 and 2 as they could be contradictory. Clarification on what is meant by “institutional facilities” is necessary given that there are certain institutions which might benefit PWD.

Jamaica agreed with Japan of an inconsistency in the article. This could be resolved by giving the PWD the right to choose to be institutionalized, adding “without his/her consent” to the end of 2(a).

Disabled People International (DPI) supported the right to be part of a community, regardless of the type of disability, as this was a key issue in the realization of the human rights of PWD. Many of the national affiliates of DPI had in fact emerged as a result of protest to the institutionalization of disabled people. DPI strongly believes that institutionalization should not be a valid option, no matter how severe the disability.

Ireland generally supported the underlying ideas of the article but had some questions on the wording. He pointed out that no one has the absolute right to choose where they lived, that this could even mean a right to live in a place beyond the PWD financial means, especially given the reference to financial support. As this is a legal instrument, the text should avoid ambiguity. Institutionalization has been discussed at length in the thematic consultations and suggested that this issue could be better dealt with in that context. Community living as dealt with in 2 (b) is not necessarily the same as living in the community, as the former could mean living in an institution, which was clearly not the intention of the paragraph.

Inclusion International (II) described the personal experience of the total desolation of living in an institution for 15 years and took exception with the positions of Ireland and Jamaica, asserting that there was no right to be institutionalised. PWD who are perceived as having “high needs” can in fact live in the community with its support.

RI called the article “critically important in the overall project of liberating PWD to be the masters of their own lives” and noted that commitment to autonomy and personal choice was at the heart of the article. There was a conceptual distinction between paragraph 1 and 2 and proposed that the title of the article be changed to say “right to independent living and to be part of the community” with subsequent necessary changes in paragraph 1 (due to the title change). The article should provide “an exceptionally strong presumption” against institutionalization but prioritize above this the choice of the person in where they live, so that for example, an individual could then choose to stay in a group home.

Lebanon considered this article relevant for everyone’s right to choose with whom and where they wanted to live. It was in favor of a state obligation to promote the right of PWD to live in the community and find homes that are integrated into the community. It proposed that paragraph 1 be amended such that “no person with a disability should be forced to live in an institution” and the Article title would be changed to the “right to live in a community and be part of it.”

Colombia asked PWD and their organizations for alternatives in cases such as abandoned disabled children if there should be no institution. If a home could not be offered they would be sent to the streets. This article also needed to serve as a tool for states to protect people that might harm themselves or others, such as a case of a schizophrenic person “in crisis.” The Coordinator noted that states have obligations with regard to its citizens and that this was a matter in which a balance with these obligations had to be found. He pointed out that there is always more than one dimension to any particular issue.

South Africa hoped that the article would also refer to the extended family where it exists because some PWD are considered an appendage of the extended family, and not of value. It also called for the qualification of paragraph 2 with the word “respectfully.” Paragraph 1 placed a significant financial bearing on State Parties and hoped that this would be fully explored at the next AHC.

India reiterated that it represents a population of over one billion people, of whom “the number of people who have severe/multiple disabilities may be greater than the population of some countries”. Abandonment and destitution relation to PWD is common to many developing countries, and the financial commitments as called for from the State in the current wording in the first paragraph cannot be supported. “Institutionalisation is often not a choice” for the state, which would not be able to extend the financial support necessary for independent living for a population for whom food and shelter is a desperate need. “There will be an enormous difference between developed and developing countries on this issue” she stressed. In this regard, ethics and criteria need to be developed that govern staff and conditions in these institutions. She proposed consideration for Article 11(e) of the Indian Draft on the Right to Rehabilitation Services for alternative text.

New Zealand called for an overall statement on the concept of the “ordinary life” as the Article concentrated too much on services. It noted the importance of having one’s own home as stated in Article 16, in terms of the self control it affords the PWD, is connected to the concept of autonomy, and highlights the obligation to provide services to people living at home rather than supporting institutions that provide services to PWD as has been the case. The article also needed to reference the right to live in a community “of one’s choice,” which is important in the context of rural and remote areas.
The World Blind Union (WBU) noted that there should be no difference in the treatment of abandoned children with disabilities from those who do not have a disability. It was always better for all children to live in a family situation than in an institution. It should the responsibility of the government to find such alternatives. Financial restrictions on choosing where to live applies to all people, but the right of PWD to move to one area from another must be protected.

Jamaica cautioned that it should not be construed as being pro-institutionalist to call for a provision allowing for the extreme circumstances states will face from time to time in dealing with this issue. He proposed the rewording of 2(a) so that “no PWD should be forced to reside in an institution without his or her choice” as Lebanon had stated. In this regard, the important and fundamental right to choice would be preserved.

Thailand prioritized the importance of the principle of freedom of choice and individual autonomy above anything else in relation to institutionalisation. Disability was more a “salad bar and not a melting pot” and in this regard the Convention must reflect that there is no one way to address disability and must accept differences. The delegate highlighted his own experience as where his education in Braille would not have been possible had it not been for the residential school for the blind he lived in for 10 years, which he regarded as a positive experience. If one lives in a remote community the opportunities to learn Braille may not exist. Special residential schools also let students maintain their cultural identity and heritage. He was uncomfortable with 2(a) and the last sentence of paragraph 1 and would revisit the matter when discussion turned to the article on education. He noted that the article should not only reflect one model because the “cost of a person to be deprived of self-development is too high to choose one model over another.”

WNUSP said that there might be a way to deal with Thailand’s point on schools vs. institutions in how institutionalization is defined and reiterated the point that such schools might be different than what Inclusion International was talking about. “We may not have an easy answer to the question of resources” but the issue here is the perception by others that PWD need to be segregated from society, where a person without a disability makes the decision for/about the PWD, and the need for a shift away from this paradigm. Here the institution becomes a prison. So autonomy is the central issue in institutionalization. In addition, the “right to live in a family” could also be a problem because some families can confine PWD in the home - the qualification of a right to have autonomy within the family environment should be added here, which would allow for supportive family situations as those raised by the WBU. The notion of PWD deserving an “ordinary life” over that of services was important, with the ultimate objective of universal design in mind. The central issue here is the freedom of choice and the opportunities for PWD to exercise that choice. Regarding the quandary between institutionalization and living in the streets, one way would be the obligation of states to provide public housing.

Canada said that members should be careful about not inadvertently establishing rights when there were talking about freedoms and choices. Even developed nations have problems in providing all we would want to PWD; that is, the responsibility cannot be met by absolute obligations. He noted the institutionalisation of his own father against his will as an example of situations that can be beyond the capability of the family to support, at which point the state needs to be empowered to step in. While there should be a strong presumption of individual choice we “must not close door” to those hard situations where a balance is necessary.

Morocco also supported the right of PWD to make a choice to enter into an institution. A principle adopted by UNESCO, ILO, and WHO of “shared views” on CBR programs should be added to Article 17.

Slovenia said that the first part of the article contradicted with the second and proposed to either delete 2(a) or link it to the freedom to choose.

Germany emphasized that civil, political, economic, social, and cultural rights are independent and indivisible, especially when it comes to PWD. The right to live in the community entails 2 aspects - the freedom of choice, and the right to an adequate standard of living as set forth in Article 11 in the ICESR. The implications of this for PWD are they do not have the choice to live outside of an institution even if they are not committed to an institution by police or other forces. The question of forced institutionalization is a separate issue, that, as the Irish delegation has suggested, should be dealt with elsewhere. Accordingly Paragraph 1 should be reformulated so that “PWD have their equal freedom to choose their own living arrangements. This freedom includes the right not to reside in an institutional facility.” Paragraph 2 should be reformulated to reflect Article 11 of the ESCR that reflects states recognition of the right of PWD to an adequate standard of living “which enables PWD to live independently.” The term “independent living” as proposed by RI in a title change is preferable to that of “community based rehabilitation” as proposed by Lebanon. The latter practice, while widely recognised and used, does not fit with the purpose of this Convention.

Republic of Korea emphasized that the issue of community living autonomously is crucial to this convention and supported RI’s and Germany’s position regarding the title of this article to include “the right to enjoy independent living.” This is not a new concept and is reflected in the Preamble to the Bangkok Draft.

Serbia and Montenegro recognized that “one of the preconditions to exercise the freedom of choice of where to live would be the necessary support” for PWD. Attentive to the circumstances of developing countries such as India, it suggested that a provision obliging states to act in this regard “within the maximum resources” should be included. N order to make for a simpler text, the Paragraph on institutionalization, 2(a), should be deleted, and dealt with elsewhere in the Convention.
South African Human Rights Commission supported the amendment to the title proposed by RI and Germany adding “independent living”, as well as the deletion called for by India of States’ obligations to provide financial support so that Paragraph 1 ends after “their families.” In accordance with the title change Paragraph 2 (a) should either be deleted or qualified with the phrase “against their will.” Given the focus of the article emphasizing informed choice, measures and actions to enhance this should be included, such as the obligation of states to educate PWD about their choices.

Inclusion International referred to programs from the World Bank that showed that even in poor countries, attitudes could be changed, which is the central issue, towards greater acceptance of PWD in the community. Often it was more expensive to have PWD living in institutions than in the community. It was therefore necessary to say something against institutions because if the article did not refer to it, states would not be forced to deal with the problem. It added that the poverty problem should be dealt with in this convention.

Disability Australia Limited endorsed the position stated by RI, Germany, Ireland that freedom of choice and autonomy are at the forefront of the article. However the “genuine problem of destitution” in extended families in societies that are transitioning to nuclear families cannot be avoided, especially for people with multiple and severe disabilities. States need to respond to the need for safe shelters for grown-up and adult children. Families of PWD as well as PWD themselves have limited economic capacity. In order to accommodate the diversity of circumstances and cultural practices that exist among PWD, this Article should include a provision granting states the freedom, if circumstances so warranty, to provide subsidized homes that would allow PWD to choose their own homes – whether to live with similar people, or to “suffer institutionalization and confinement within the four walls of a family” if they so choose.

The World Federation and Deaf echoed Thailand’s position that with the personal experience of its representative, who “learned a lot in institutions, and that’s why I’m here.” Yet it also influenced his personality so that “I still need psycho-therapy from time to time.” Reflecting this double side of institutionalization, he supported the position of WNUSP and DAL that “there should be a way for PWD to live together without being locked up” or living regimented lives that “were better for the staff of the institutions.” The difference between children and adults should be taken into account. A creative solution should be found in the case of developing countries, where “it may be better to have a roof over one’s head than to sleep in the streets”. Addressing the specific problems of the deaf-blind even when in institutions – isolation and a lack of stimulation because of the inability to communicate with one another – may be a luxury in a poor country.

DPI Africa noted that the “right to community living” should be retained in addition to the “right to independent living” because in rural Africa, a mother who gives birth to a child with a disability is often exiled. “Institutions are not an answer to poverty” – one cannot argue that because in developing country societies there are PWD are poor they should then be put into institutions. This “does not make any sense.” Central to the debate about institutions is that they suspend PWD’s rights. The problem here is that “no one is watching these institutions.” When you “close the door” such a regimented lifestyle becomes possible. Finally the argument that institutions are cheaper than having PWD live in the community cannot be made in this Convention, “because no one has costed this” and there is therefore no basis for this. If we start costing these issues, we risk complicating this process.
China proposed that the term “institutionalized” should be clarified in 2(a), and the provision should prevent mandatory or forced choice of institutionalization. PWD are the same as others and should be able to choose their way of living /residence taking into account other services.

Mexico believed that this Article should be “seriously reformulated.” The 2 elements that need to be included in this article are: refraining from discrimination so that members of the community recognize the right of the PWD and their institutions to join in the community; and “all necessary measures” to integrate PWD into the community should be recognised.

Lebanon noted that state policies should: 1. “always give priority to life within the community” and this is not the same as CBR; 2. provide accommodations so that freedom of choice is possible; 3. whether the person is living in an institution or living independently, the PWD’s quality of life and dignity should be respected. Difficult though this may be this “should be our ultimate goal”.
WNUSP sought to address emerging positions trying to separate the issue of institutionalization with institutionalization that uses police powers to exclude PWD. Such distinctions are “hypocritical” and “dishonest”. This article needs to deal with this whole area of life called institutionalisation, both short and long-term, as both involve the deprivation of the liberty, and are prisons. In this context, we cannot call for institutions to be “made more humane” – whether people end up there due to police powers or economic and social factors, the central problem remains society’s ignorance in integrating these PWD.

Thailand suggested developing a distinction between a school for blind and/or deaf situation and institutionalization that is forced. The representative noted that while he personally enjoyed being in a school for the blind at the elementary level, he also enjoyed his secondary studies in an integrated environment. The article should not embrace a term that indicates a practice or movement, as indicated by the term “independent living” – the term “to live independently” is a generic term that is preferable instead.

World Blind Union likewise sought to make a distinction between institutions and special education schools for deaf and blind people. This article should protect such educational opportunities. Schools are different than institutions because the parents of the children are still in custody of those children, which is not the case in other situations. It supported RI’s title change and noted that the concept of independent living should be referred to, not the movement.

Mali cautioned that if 2(a) was eliminated, people would be left in need. In the African continent specialized institutions provide education and social reintegration of PWD. 2(a) should instead read “the state should ensure PWD has an independent life, which does not exclude institutions with the consent of the individual or the family, as necessary”. In this regard, the clause could preserve the independence for non-minors and prohibit forced confinement. This clause has the added benefit of recognizing the role of the family in integration.

II sought to focus the discussion on the central issue, not that PWD “need to fit into something” but that the community needs to accept them. He endorsed educational schools but for people with intellectual disabilities institutions are never a choice.

Sierra Leone said that institutionalization should not be excluded in 2(a) and agreed with Canada that in certain circumstances, individuals might have to go to an institution, while others might have to be at home. In either case the state should provide all the services to meet the needs of PWD. The concept of institutionalization should not be separate from the concept of community. Institutions are, “broadly speaking, a part of the community.” This article should therefore address both aspects – the requirements from the institution on the one hand, and protection of the choice of the PWD on the other.

WFD echoed the concern of the WBU in that it did not want to see the text force deaf schools to close, and did not want the article to be interpreted as saying that. The educational setting “must be secured in this article.” It should ensure independent living in families, in the home, and within the community. It recognized that there was a separate Article 24 on education and there should be no inconsistency with that.

New Zealand stressed that an underpinning principle in the Convention should be that PWD have the right to the same treatment as other people. “If it wouldn’t be done that way for non-disabled people, we shouldn’t look at it as a solution for disabled people”. For example, an alternative to the need for blind people to learn Braille should be to make Braille more readily available in local schools.

WNUSP stressed that the situation of children can be addressed separately from adults. While it was understood that parents will need to make certain decisions on behalf of children, in the case of adults, there can be no substitute decision-making based on the principle of free choice.

Volume 3, #8
January 14, 2004

Morning Session
Commenced: 10:19 AM
Adjourned: 1:03 PM

LIVING INDEPENDENTLY AND BEING INCLUDED IN THE COMMUNITY

The Coordinator referred members to A/AC.265/2004/WG/CRP.3/Add.11 for this discussion.

WNUSP called attention to “residential and other community support services in 1(c). “On a voluntary basis” should be added some place in the paragraph as these types of services could become a sort of mini-institution for PWD.

Coordinator said that “have access to” addresses the idea that the services should be voluntary.

The Republic of Korea said that the article should include the idea that State Parties should ensure any kind of personal services for PWD if they are required for that person to live in the community.

The Coordinator said that “appropriate and effective measures in the chapeau and “access to a range of…services” covered this point. Was further elaboration required, in this case?

The Republic of Korea replied that those elements covered the issue of necessary support but specifying support would elaborate on the issue of support.

The World Federation of the DeafBlind concurred that personal assistance should be mentioned. It is important for deafblind people to have personal assistance to be part of the community (i.e. move around, shop, take part in meetings).

Lebanon said that personal assistance should be clearly mentioned in 1(c).

Uganda said that accessibility of a residential facility is also related to personal assistance. The text should also mention the cost of personal assistance.

Thailand supported the inclusion of personal assistance in 1(c) in principle but did not know if it would be feasible for states to provide it, because it is at the level of an individual. This would be especially true for developing countries, which sometimes cannot even provide public assistance. 1(c) should incorporate the following phrase: “including personal assistance, if possible, or where appropriate.”

Coordinator said that members could discuss personal assistance in the context of the articles on mobility and accessibility.

ROK concurred with Thailand’s proposal because providing personal assistance could be a cost burden for some governments. In the future though, the rights of PWD could be actualized through personal assistance.

WFDB reminded members that it not impossible to provide PWD with personal assistants. In practice, many assistants in developing countries are volunteers. Personal assistants do not have to be paid and can also be family members. Personal assistance is necessary for independent living for the deafblind, necessary for independent living.

South Africa supported the article in principle but proposed that 1(b) be removed because it is redundant. 1(a) already allows for choice in place of residence.

Colombia said that developing countries might not be able to provide personal assistance as a minimum standard as a form of support for independent living. Personal assistance could be included as a possibility or an option among many other choices for the State.

Ireland commented that it was unsure how an international law mechanism could force people to become volunteer personal assistants. The concept needed to be developed further. The article should not contain a list of forms of support as it would be hard to reach agreement on a Convention that includes long listings.

Coordinator proposed that the WG mark the issue of personal assistance as important issue for the AHC to discuss or see as an option. It is not possible to find a solution to the issue here and now.

India proposed a change in the title to “living in and being included in the community.” The existing title could be construed as an attempt to segregate PWD from their families in the Asian context, where extended families are important.

Disabled People International (DPI) proposed that “measures to make PWD aware of the existence of such services” be added to 2(c).

Inclusion International (II) said that 1(b) should not be deleted as the Convention should contain a clear message that institutions should be shut down. The Convention is not just a mechanism for lawyers to interpret but for PWD themselves.

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