E/CN.5/2004/4
Views of Governments on the proposals contained in the report of the Special Rapporteur on Disability (E/CN.5/2002/4), especially on the suggested supplement to the Standard Rules on the Equalization of Opportunities for Persons with Disabilities : report
UN Document Symbol | E/CN.5/2004/4 |
---|---|
Convention | Convention on the Rights of Persons with Disabilities |
Document Type | Report of the Secretary-General |
Session | 42nd |
Type | Document |
Description |
24 p. |
Subjects | Persons with Disabilities, Equal Opportunity |
Extracted Text
United Nations E/CN.5/2004/4
Economic and Social Council Distr.: General
26 November 2003
Original: English
03-63420 (E) 201203
*0363420*
Commission for Social Development
Forty-second session
413 February 2004
Item 3 (b) (ii) of the provisional agenda*
Follow-up to the World Summit for Social Development
and the twenty-fourth special session of the General
Assembly: review of relevant United Nations plans
and programmes of action pertaining to the situation of
social groups: equalization of opportunities for persons
with disabilities
Views of Governments on the proposals contained in the
report of the Special Rapporteur on Disability
(E/CN.5/2002/4), especially on the suggested supplement to
the Standard Rules on the Equalization of Opportunities for
Persons with Disabilities
Report of the Secretary-General
Summary
In its resolution 2002/26 of 24 July 2002 entitled Further promotion of
equalization of opportunities by, for and with persons with disabilities and protection
of their human rights, the Economic and Social Council requested the Secretary-
General to seek the views of Member States on the proposals contained in the report
of the Special Rapporteur on Disability (E/CN.5/2002/4), especially on the suggested
supplement to the Standard Rules on the Equalization of Opportunities for Persons
with Disabilities, and to submit a substantive report to the Commission for Social
Development at its forty-second session. The Secretary-General solicited the views
of the Governments on the report and the proposed supplement to the Standard Rules
in a note verbale dated 6 June 2003. The views contained in the replies from
Governments to the note verbale are summarized in the present report.
* E/CN.5/2004/1.
E/CN.5/2004/4
Contents
Paragraphs Page
I. Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13 3
II. Summary of issues included in the proposed supplement . . . . . . . . . . . . . . . . . . . . . 47 3
III. Views of Member States 833 4
IV. Summary and proposals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3437 11
Annex
Reaching the most vulnerable: proposed supplement to the Standard Rules
on the Equalization of Opportunities for Persons with Disabilities. . . . . . . . . . . . . . . . . . . . . . . . 13
E/CN.5/2004/4
I. Introduction
1. At its fortieth session, from 12 to 22 February 2002, the Commission for
Social Development examined the note by the Secretary-General transmitting the
report of the Special Rapporteur on Disability of the Commission for Social
Development on monitoring the implementation of the Standard Rules on the
Equalization of Opportunities for Persons with Disabilities on his third mandate,
2000-2002 (E/CN.5/2002/4). The report included, inter alia, the proposal of
complementing the Standard Rules with a supplement, which aims at introducing
new areas and complementing those areas that are not considered to be sufficiently
developed in the Rules, on the basis of the experience gained during the mandates of
the first Special Rapporteur.
2. In its resolution 2002/26 of 24 July 2002 entitled Further promotion of
equalization of opportunities by, for and with persons with disabilities and
protection of their human rights, the Economic and Social Council requested the
Secretary-General to seek the views of Member States on the proposals contained in
the report of the Special Rapporteur, especially on the suggested supplement to the
Standard Rules, and to submit a substantive report to the Commission for Social
Development at its forty-second session.
3. The Secretary-General solicited the views of Governments on the report and
the proposed supplement to the Standard Rules in a note verbale dated 6 June 2003.
The views contained in the replies from Governments to the note verbale are
summarized in section III below.
II. Summary of issues included in the proposed supplement
4. Since their adoption by the General Assembly in its resolution 48/96 of 20
December 1993, the Standard Rules on the Equalization of Opportunities for
Persons with Disabilities have played a significant role in informing the elaboration
of national policies and practices on disability in the entire world. It is widely
agreed that over the last decade the application of the principles expressed in the
Rules has greatly contributed to the diffusion of best practices on equalization of
opportunities for persons with disabilities. However, the widespread application of
the Rules has also led to identifying gaps and limitations in the scope of their action.
5. The proposed supplement to the Standard Rules originates from the analysis of
the shortcomings and areas in need of improvement within them. The process was
initiated by the first Special Rapporteur on Disability in his report to the
Commission on Social Development at its thirty-sixth session (E/CN.5/2000/3). In
that report the following were pointed out as issues to be further investigated:
gender concerns; housing and communication issues; the needs of children and older
persons; the needs of persons with developmental and psychiatric disabilities; and
the needs of persons with disabilities in poverty situations.
6. The process of analysis that led to the elaboration of the proposed supplement
to the Standard Rules is the product of the joint effort of many international
organizations and individual experts, including organizations of persons with
disabilities and the panel of experts attached to the Rules monitoring mechanism.
E/CN.5/2004/4
7. The proposed supplement brings into focus the specific needs of the most
vulnerable among persons with disabilities. It specifically focuses on the following
areas: (a) fundamental concepts; (b) adequate standard of living and poverty
alleviation; (c) housing, including the issue of residential institutions; (d) health and
medical care; (e) emergency situations; (f) access to the social environment; (g)
communication issues; (h) personnel training; (i) gender; (j) children with
disabilities and the family; (k) violence and abuse; (l) older persons; (m)
developmental and psychiatric disabilities; (n) invisible disabilities; (o) suggested
further initiatives in national policy and legislation.1
III. Views of Member States
8. As of 1 November 2003, 16 replies representing the views of 40 Governments
were received in response to the note verbale sent by the Secretary-General. The
response to the note verbale was very limited, representing approximately one fifth
of the total number of Member States. Replies were received from Argentina,
Burkina Faso, Cameroon, China, Cyprus, the Czech Republic, Honduras,
Luxembourg, Madagascar, Malta, Oman, the Philippines, the Russian Federation,
Serbia and Montenegro, Trinidad and Tobago as well as from the European Union
on behalf of its 15 members and 10 accessing countries.2
9. As it appears clearly from the list of responding Member States, the
geographical coverage of the contributions received was also quite limited. The
largest number of contributions originated from Europe; replies from other regional
groups included three Member States from Latin American and the Caribbean
region, two from Africa and two from Asia. Most replies came from developed
countries, while only one contribution was received from a least developed country
(Burkina Faso).
10. The relatively low degree of interest expressed by Member States in
articulating their views on the proposed supplement to the Standard Rules is open to
interpretation. It may reflect a lack of specific interest for the inclusion of the
proposed supplement in the Rules. It may also reflect the fact that many
Governments tend to consider that the Ad Hoc Committee on a Comprehensive and
Integral International Convention on Protection and Promotion of the Rights and
Dignity of Persons with Disabilities has become a more appropriate forum to discuss
disability issues and instruments.
11. Argentina highlights the fact that disability is increasingly recognized at the
international level as a human rights issue. It agrees that the Standard Rules have
provided a fundamental contribution to the formulation of policies aiming at
improving the enjoyment of rights by persons with disabilities. However, taking into
consideration the process of elaboration of a Comprehensive and Integral
International Convention on Protection and Promotion of the Rights and Dignity of
Persons with Disabilities and particularly the progress made during the second
session of the Ad Hoc Committee on the Convention, Argentina suggests that no
supplement to the Standard Rules should be adopted so as to avoid the overlapping
of the two processes. Argentina also suggests that it would be preferable for the
observations of the first Special Rapporteur to be taken into consideration during the
process of elaboration of the Convention.
E/CN.5/2004/4
12. Burkina Faso suggests a list of actions and initiatives that should be taken in
order to further the implementation and scope of the Standard Rules: multiply the
seminars on the Standard Rules to the benefit of association leaders, public and
private mass media, local communities, parliamentarians and members of
Governments; strengthen the capacity of associations through functional literacy
programmes and training in advocacy and social mobilization; improve the
participation of persons with disabilities in civil society organizations; stimulate
intersectoral coordination of rehabilitation and equalization of opportunities for
persons with disabilities; strengthen the provision of technical aids and equipment;
promote inclusive formal education for all children with disabilities; review and
improve social protection provisions for persons with disabilities; further extend
accessibility to buildings through ramps, to schooling and to appropriate health care,
to vocational training and farming, to sport and leisure; and develop communitybased
rehabilitation programmes that involve families, disability organizations and
institutions. Burkina Faso stresses the need for the United Nations, particularly the
United Nations Voluntary Funds, to support the implementation of national
programmes in favour of persons with disabilities.
13. Cameroon, while noting the operational relevance of the proposed supplement,
expresses concern that the emphasis on special needs indirectly portrayed persons
with disability as being permanently dependent. On the contrary, the supplement
should convey a strong sense of how social integration could lead persons with
disability to autonomy and sustainable livelihood. Cameroon also stresses that the
implementation of the proposed supplement requires the mobilization of
considerable financial, human and material resources far beyond those available in
developing countries, particularly those faced with serious economic difficulties.
Cameroon observes with appreciation that the term persons with disabilities is
now used to qualify persons of all ages with disabilities and it systematically refers
to men and women with disabilities.
14. With regard to section B of the proposed supplement, on adequate standard of
living and poverty alleviation, Cameroon emphasizes that poverty critically
aggravates the often precarious situation of many persons with disabilities.
Regarding section I, on gender, it highlights the fact that women with disabilities are
often exposed to multiple discriminations: as women, as persons with disabilities
and as economically weak subjects. As a consequence, women with disabilities face
enormous difficulties in their social integration. As to section J, on children with
disabilities and the family, Cameroon reaffirms that the place of children is within
their families and in society and that this principle must be recognized and
protected. It also highlights the importance of disability prevention and early
rehabilitation. With regard to the proposition contained in paragraph 70 that States
should support women and men with disabilities wanting to pursue a separation or a
divorce owing to abuse or violence, Cameroon observes that its policies aim at
protecting families and at avoiding the multiple dangers of divorce and its negative
social consequences. Regarding section K, on violence and abuse, Cameroon affirms
that special legislative measures must be taken in order to protect the rights of
persons with disabilities facing sexual and other forms of violence. As to section M,
on developmental and psychiatric disabilities, Cameroon recommends that States
should encourage and support the creation of organizations aiming at defending the
interests of persons with developmental and psychiatric disabilities. Regarding
section N, on invisible disabilities, Cameroon notes that it is important to take into
E/CN.5/2004/4
consideration invisible disabilities and to take measures in order for persons with
invisible disabilities to be able to participate into social life in conditions of
equality.
15. China is of the view that, while the Standard Rules had played an important
historical role in advocating the rights of persons with disabilities, enhancing their
status and improving their livelihood, some elements of the Rules need to be
supplemented in order to take advantage of recent developments so as to ensure that
the rights of persons with disabilities are fully protected and exercised. It expresses
its approval of the proposed supplement to the Rules in its general content. With
regard to the formulation of sections, and in particular on the ones concerning
adequate standard of living and poverty alleviation, housing, health and medical
care and access to the social environment (paragraphs B.13, 14 and 16, C.21 and 25,
D.27, 28, 33 and 34 and G.43 of the proposed supplement), China suggests that
emphasis should be placed on statements of principle, stating the direction towards
which countries should try to develop. It remarks that the use of terms such as
ensure should be avoided, in order to take into account as much as possible the
different levels of economic and social development of the majority of developing
and less developed countries and their available resources. China also believes that
the Standard Rules and the process towards a Comprehensive and Integral
International Convention on Protection and Promotion of the Rights and Dignity of
Persons with Disabilities should be complementary and mutually reinforcing. It is of
the opinion that, as the technical norm that has guided the development of countries
in areas concerning persons with disabilities for many years, the Standard Rules
should continue to play their role, while the Convention should serve as an
international legally binding instrument that would provide the legal guarantee for
achieving the goals set forth in the Rules.
16. Cyprus acknowledged receipt of the note verbale but did not present any
specific views.
17. The Czech Republic welcomes the initiative of complementing the Standard
Rules through the proposed supplement and expresses its commitment to elaborate it
further. As a general comment to the proposed supplement, it notes that some of the
provisions presented in the proposal are unrealistic in terms of implementation by
developing countries, such as, for example, rule D.29: States should ensure that all
medical, paramedical and related personnel are adequately trained and equipped to
give medical care to persons with disabilities
. The Czech Republic believes that,
while it would be possible to provide medical personnel with basic information on
the specific needs of persons with disabilities, it is quite unrealistic to provide all
medical personnel with adequate specific knowledge on disabilities. As a
consequence, the Czech Republic suggests that such a provision should be rephrased
so as to urge States to establish sufficient networks of specialized centres and
experts with all necessary qualifications effectively to provide medical care to
persons with disabilities.
18. Regarding section A of the proposed supplement, on fundamental concepts, the
Czech Republic agrees with the need to use the widest and most general
classification of disabilities. However, it stresses the importance of clarifying that
the term prevention should not be related to the notion of aborting a foetus with
established high risk of impairment. As to section B, on adequate standard of living
and poverty alleviation, the Czech Republic highlights the fact that States should,
E/CN.5/2004/4
within their capacities, also pursue positive discrimination (i.e. targeted social
support) of persons with disabilities in case their disabilities constitute too great a
disadvantage with respect to others in relation to equal treatment. With regard to
section C, on housing, including the issue of residential institutions, the Czech
Republic is concerned that provision C.21 could encourage some poor families to
mutilate their children in an attempt to claim provision of housing from the State. As
to section D, on health and medical care, the Czech Republic stresses that States
obligations should be realistically related to their level of development. It also
considers that ensuring that persons with disabilities are informed of their rights,
particularly of the right to self-determination, as stated in rule D.33, is of special
importance.
19. The Czech Republic regards the inclusion of the issues of access to the social
environment (section F), communication (section G) and personnel training (section
H) as very important. It suggests, however, that the enumeration of disabilities
included in rule G.49 should be dropped, as it would always be partial, and
highlights that in such a list blindness is missing. It also suggests that rule H.55
should call for access to continuing education for all persons, including persons with
disabilities. As to section I, on gender, the Czech Republic is uneasy about the
reference to the fact that women with disabilities are less frequently married, despite
its agreeing with the seriousness of the issue, as there is little that States can do.
Regarding section J, on children with disabilities and the family, the Czech Republic
suggests that J.65 should be amended by adding the words mental and
developmental after the word severe. With regard to section L, on older persons,
it welcomes the inclusion of such an issue in the proposed supplement. As to section
M, on developmental and psychiatric disabilities, the Czech Republic fully agrees
that the needs of persons with such disabilities are not satisfactorily dealt with in the
Standard Rules.
20. The European Union highlights that the past 10 years are believed to have
brought more progress in policy development and legislation on disability than
earlier decades, largely owing to the role played by the Standard Rules. It is of the
opinion that this is the result of the Rules being short in format, including relatively
concrete recommendations and being attached to a special monitoring mechanism, in
addition to the fact that they have been elaborated in close cooperation between a
large number of Government delegations and representatives of international
disability organizations. The European Union indicates that the Rules have been
particularly successful in clearly defining the role of the State in the implementation
of measures towards full participation and equal opportunities for persons with
disabilities. In its opinion, the Rules have also contributed to strengthening the
human rights dimension and to providing an active monitoring mechanism within
the United Nations system. As a result of the very important role played by the
Rules, the European Union emphasizes the importance of keeping them as the main
international guidelines for further policy development in the field of disability and
therefore supports the proposal of complementing the Rules with additional
provisions in the form of a supplement based on the draft presented by the first
Special Rapporteur.
21. As a general comment on the proposed supplement, the European Union notes
that there seems to be some overlapping between the proposed supplement and the
Standard Rules. As a result, it proposes to engage in further comparison between the
two texts in order to avoid duplication. In addition, the European Union notes that
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neither the Rules nor the proposed supplement contain a section on mobility and
transport. The inclusion of an additional section on this issue is therefore suggested.
It also proposes that the supplement to the Rules should include a specific reference
to accessibility of the Rules in order to make them and the supplement to them fully
accessible to persons with disabilities.
22. With regard to section A of the proposed supplement, on fundamental
concepts, the European Union agrees with the Special Rapporteur that the best way
to achieve compatibility with the original text of the Standard Rules is to keep to the
same terminology in the proposed supplement so as to avoid confusion between the
original text of the Rules and the supplement. As to section B, on adequate standard
of living and poverty alleviation, it highlights the importance of effectively
including adequate measures to meet the needs of persons with disabilities within
programmes to combat poverty and improve living conditions of the population at
large. In this regard, the European Union notes that reference should be made to the
Millennium Development Goals included in the United Nations Millennium
Declaration. It agrees with the importance of section E, on the particular
vulnerability of persons with disabilities in emergency situations. Regarding section
F, on access to the social environment, the European Union notes that, while this
section was not explicitly part of the mandate to complement the Rules, the
inclusion of a section of this nature is justified in view of the great importance of
attitudinal barriers as an obstacle to full participation of persons with disabilities.
23. As to section G, on communication issues, the European Union stresses that
the role of information and communication technology in the disability field is
growing rapidly, which makes it necessary to update the Standard Rules in this area.
It views training personnel in the disability field as being of critical importance and
therefore agrees with the inclusion of section H in the proposed supplement. The
European Union is of the opinion that the proposed supplement introduces important
aspects of personnel training, such as awareness and knowledge of the occurrence of
violence against persons with disabilities, attitudinal barriers and knowledge about
the basic living conditions of persons with disabilities. With regard to section I, on
gender, it points out that women and girls with disabilities are often exposed to
double discrimination and that a special emphasis on gender equality is therefore
particularly relevant. As to section J, on children with disabilities and the family, the
European Union stresses that the knowledge about the situation of children with
disabilities has increased considerably during recent years, owing to the work done
in connection with the monitoring of the implementation of the Convention on the
Rights of the Child. It is therefore of the opinion that a section on these issues is
highly justified both as a complement to rule 9 of the Standard Rules, on family life
and personal integrity, and as an incentive to develop policies and programmes to
support children and youth with disabilities. The European Union stresses the
importance of the suggested measures aimed at facilitating the life of children with
disabilities within their families.
24. Regarding section K, on violence and abuse, the European Union notes with
appreciation the initiative to focus on these issues in a separate section and stresses
the importance of both continuing research in this area and increasing awareness and
knowledge of these issues among professionals. As to section L, on older persons,
the European Union agrees that the supplement clarifies the need to include the
specific needs of older persons with disabilities in national policies and
programmes. It also states that it is important to include the situation of older
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persons with disabilities in future studies and research on disability. With regard to
section M, on developmental and psychiatric disabilities, the European Union notes
that persons with developmental and psychiatric disabilities are among the most
vulnerable in society and are often particularly exposed to prejudice and negative
attitudes. It stresses that references to the needs of these two groups have been
included in several sections and there therefore seems to be some overlapping
between section M and several other sections. However, such overlapping could be
acceptable in view of the importance of recognizing the needs of these groups. The
European Union is of the opinion that the provisions introduced by the supplement
on the situation of these groups represent the most important contributions of the
supplement itself. Regarding section N, on invisible disabilities, it notes that this
topic is not explicitly included in the mandate of the Special Rapporteur to
complement the Standard Rules. However, the European Union expresses its support
to the inclusion of this topic, as it puts the focus on an important phenomenon that
often has a negative impact on the inclusion of persons with disabilities in society.
As to section O, on suggested further initiatives in national policy and legislation,
the European Union notes with appreciation the valuable recommendations
presented by the first Special Rapporteur, on the basis of the experience gained
during the monitoring of the Rules. It is also of the view that non-governmental
organizations should be more closely involved in the process of further integration
of persons with disabilities at the national level.
25. Honduras underlines the importance of the process of elaboration of a
Comprehensive and Integral International Convention on Protection and Promotion
of the Rights and Dignity of Persons with Disabilities, notably with reference to the
need of ensuring the protection of the rights of persons with disabilities, for their
benefit and with their participation. Honduras also agrees that the Standard Rules
are the guiding instrument to end exclusion and discrimination of persons with
disabilities and expresses its approval for the inclusion of the proposed supplement
to the Rules.
26. Luxembourg expresses its general support to the proposed supplement to the
Standard Rules and stresses the importance of consulting organizations of persons
with disabilities at all stages of development and implementation of programmes
aimed at persons with disabilities. Regarding section C of the proposed supplement,
on housing, including the issue of residential institutions, Luxembourg states its
support to the de-institutionalization of persons with disabilities. As to section D, on
health and medical care, and in particular on D.33, it highlights the fact that the
right of persons with disabilities to refuse treatment and the right not to comply
with forced admission to institutional facilities should not affect the right of
authorities to institutionalize persons with disabilities in case their conditions make
them dangerous for themselves and for others.
27. Madagascar notes with appreciation the content of the proposed supplement
and expresses its agreement on the proposals it contains.
28. Malta expresses its full support to the recommendations presented by the first
Special Rapporteur in his report.
29. With regard to section A of the proposed supplement, on fundamental
concepts, Oman suggests that the second edition of the International Classification
of Impairment, Disabilities and Handicaps the International Classification of
Functioning, Disability and Health be published and circulated among Member
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States.3 With reference to section B, on adequate standard of living and poverty
alleviation, it notes that prevention must be viewed as general prevention through
environmental health and education. In order to ensure that persons with disabilities
have access to equal opportunities in education, health, employment and social
services, States should elaborate specific laws on services for persons with
disabilities. Training programmes should be developed and applied at the
community level so as to ensure the provision of specific services. As to section D,
on health and medical care, Oman notes that the need for medical personnel to give
full and balanced information concerning diagnosis and treatment to persons with
disabilities raises a matter of importance for them, their family and for society in
general. It suggests that regular television and radio programmes should be prepared
in order to maximize the dissemination of information related to disabilities. With
regard to section E, on emergency situations, Oman states that emergency services
should take into consideration the specific needs of persons with disabilities.
Regarding section H, on personnel training, it suggests that in order to set up and
support the required services for persons with disabilities and make all persons in
the community aware of them, adequate training should be provided to personnel
working in the private and public sectors and the training should include an
understanding of the substance of the United Nations Standard Rules relating to
human rights and persons with disabilities.
30. The Philippines agrees that despite the indisputable value of the Standard
Rules as guidelines in developing and establishing disability policies and legislation,
many inadequacies have emerged in the areas addressed in the proposed supplement,
such as fundamental concepts as well as children and women with disabilities,
persons with mental and developmental disabilities and communication, particularly
information and communication technology. The Philippines suggests that the
monitoring mechanisms for both the Rules and the World Programme of Action
concerning Disabled Persons4 should be synchronized and implemented as one
activity, in consideration of the need to save time, money and effort, while at the
same time improving the United Nations monitoring system in general.
31. The Russian Federation notes that the drafting and entry into force of a
Comprehensive and Integral International Convention on Protection and Promotion
of the Rights and Dignity of Persons with Disabilities may take a long time.
Therefore, it believes that prior to the completion of the Convention, the Standard
Rules would remain the basic reference in the elaboration of national policies on
persons with disabilities. The Russian Federation supports the initiative aimed at
updating the recommendations contained in the Rules and notes that the adoption of
the proposed supplement to the Rules would facilitate the progressive development
of national policies and the enhancement of legislation on persons with disabilities.
32. Serbia and Montenegro is of the opinion that the report presented by the first
Special Rapporteur deals with social and economic rights of persons with
disabilities in a comprehensive and appropriate manner. However, it believes that
more practical guidelines based on a realistic assessment of countries needs,
development level, cultural heritage, climatic conditions and environment should be
developed and suggests that the Commission for Social Development prepare such
guidelines.
33. Trinidad and Tobago suggests that the following areas should also be included
in the supplement to the Standard Rules: accessible transportation, inclusion of
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persons with disabilities in political processes, access to information and access to
the legal system. It particularly welcomes the inclusion of the issues of gender
violence and older persons in the proposed supplement, as they represent areas of
emerging interest in the country.
IV. Summary and proposals
34. Taking into account the views of Member States, the Secretariat puts
forward the following elements and proposals for the consideration of the
General Assembly.
35. The majority of Member States agreed on the very important role that the
Standard Rules have played during the past decade in informing the
elaboration of national policies and legislation in the disability field. Member
States also agreed on the fact that the extensive application of the Rules had led
to experiencing shortcomings and areas in need of further elaboration. In
general terms, the majority of Member States is favourable to the adoption of
the proposed supplement to the Rules.
36. All Member States but one that expressed their views on the proposed
supplement were of the opinion that the Standard Rules and the international
convention process were not competitive but rather complementary and
mutually reinforcing instruments. They therefore stressed that the Rules must
continue to play their role as an action-oriented set of guidelines while progress
was made towards an international convention on the rights of persons with
disabilities.
37. Member States presented both general and specific comments on the
proposed supplement as well as proposals for further amendments. Some
Member States also presented suggestions on additional actions within the
framework of the Standard Rules and on areas to be further included in the
proposed supplement. The main suggestions put forward by Member States are
as follows:
(a) Some Member States noted that, in order to take into account the
levels of development and of available resources of different countries,
emphasis should be placed on statements of principles as opposed to specific
provisions;
(b) Several Member States noted that the mobilization of large financial,
human and material resources was needed to ensure the efficient
implementation of the Standard Rules;
(c) The mobilization of additional resources aimed at supporting
national capacities on equalization of opportunities for persons with
disabilities, including through the United Nations Voluntary Fund on
Disability, was also considered necessary;
(d) Suggested additional areas included mobility and transport, the
inclusion of persons with disabilities in political processes and access to
information and the legal system;
(e) The importance of the accessibility of the Standard Rules and their
supplement to persons with disabilities was pointed out;
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(f) It was suggested that a further analysis of the proposed supplement
and the Standard Rules should be undertaken in order to eliminate overlapping
and duplication of provisions;
(g) It was proposed that the monitoring framework for the Standard
Rules and that for the World Plan of Action concerning Disabled Persons
should be synchronized and implemented as one activity and that cooperation
between the Special Rapporteur on Disability and the various United Nations
bodies and organizations involved should be strengthened and improved.
Notes
1 The full text of the proposed supplement is contained in the annex to the present report.
2 It should be noted that Cyprus, Luxembourg and the Czech Republic, while aligning themselves
with the view expressed by the European Union also presented a contribution of their own.
3 See World Health Assembly resolution 54.21.
4 A/37/351/Add.1 and Add.1/Corr.1, annex, sect. VIII.
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Annex
Reaching the most vulnerable: proposed supplement to the
Standard Rules on the Equalization of Opportunities for
Persons with Disabilities
Contents
Paragraphs Page
I. Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17 14
II. Proposed supplement to the Standard Rules . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 894 15
A. Fundamental concepts. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 810 15
B. Adequate standard of living and poverty alleviation . . . . . . . . . . . . . . . . . . . . . 1119 15
C. Housing, including the issue of residential institutions . . . . . . . . . . . . . . . . . . . 2026 16
D. Health and medical care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2734 17
E. Emergency situations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3537 18
F. Access to the social environment. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3841 18
G. Communication issues . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4250 18
H. Personnel training . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5155 19
I. Gender . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5660 20
J. Children with disabilities and the family . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6170 20
K. Violence and abuse . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7177 21
L. Older persons. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7883 21
M. Developmental and psychiatric disabilities. . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8490 22
N. Invisible disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9193 23
O. Suggested further initiatives in national policy and legislation. . . . . . . . . . . . . 94 23
E/CN.5/2004/4
I. Introduction
1. The 1990s brought more progress in disability policy and legislation than
earlier decades. This development was initiated through the activities in connection
with the observance of the International Year of Disabled Persons (1981), the
adoption of the World Programme of Action concerning Disabled Persons
(A/37/351/Add.1 and Add.1/Corr.1, annex, sect. VIII) and the activities during the
International Decade of Disabled Persons (1983-1992).
2. Since the adoption of the Standard Rules on the Equalization of Opportunities
for Persons with Disabilities by the General Assembly in its resolution 48/96
(annex) of 20 December 1993, and the establishment of its monitoring mechanism in
1994, the Rules have played a significant role worldwide in the elaboration of
national policies and legislation in the disability field. This active and practical
application of the Rules has provided new and valuable experience on how to use
the Rules in the future. At the same time, it has revealed certain weaknesses and
omissions in the present text.
3. Throughout the entire Standard Rules text, the term persons with disabilities
is used to refer to persons of all ages with disabilities. In the text of the proposed
supplement the term should always be understood as meaning girls, boys, women
and men with disabilities when no other qualifying term is indicated.
4. The purpose of preparing the proposed supplement to the United Nations
Standard Rules is to complement and develop the text in certain areas. The work is
based on the analysis of gaps and shortcomings presented by the Special Rapporteur
on Disability in his report to the thirty-sixth session of the Commission for Social
Development (E/CN.5/2000/3, annex). In that analysis the following were pointed
out: gender concerns; housing and communication issues; the needs of children and
older persons; the needs of persons with developmental and psychiatric disabilities;
and the needs of persons with disabilities in poverty situations.
5. In the process of elaborating this supplement, several international
organizations and individual experts have contributed, particularly those
representing the interests of persons with developmental and psychiatric disabilities
and children. The panel of experts, attached to the Standard Rules monitoring
mechanism, has worked with the text and made many valuable suggestions. Finally,
the outcome of the global Conference on Rethinking Care (Oslo, 22-25 April 2001),
organized by the World Health Organization in cooperation with the Government of
Norway, has been taken into account.
6. The text of this supplement does not follow the structure of the Standard
Rules. The order of sections has been chosen to avoid unnecessary repetition. The
mode of presentation combines a commentary and explanation of the text with a set
of recommendations, presented in the same way as in the Rules.
7. The most obvious common feature of the comments and recommendations in
this supplement is that they bring into focus the needs of the most vulnerable among
children and adults with disabilities.
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II. Proposed supplement to the Standard Rules
A. Fundamental concepts
8. The Standard Rules include a presentation of the International Classification of
Impairment, Disabilities and Handicaps, which was adopted by the World Health
Assembly of the World Health Organization (WHO) in 1980. This classification has
now been revised. In 2001 the World Health Assembly endorsed the International
Classification of Functioning, Disability and Health, in which functioning and
disability are understood to occur in a context characterized by personal and
environmental factors: physical, social and attitudinal. Functioning and disability
are classified at the levels of the body, the person and the society. The Classification
can be used to describe an individuals capacity to execute simple and complex
actions, which can be employed to determine appropriate health interventions and
other changes to the person. In addition, the Classification can be used to describe
actual performance in an individuals current environment. It is then possible to
identify the environmental factors that facilitate or hinder that performance so as to
determine appropriate environmental modifications or health-related interventions to
improve it. In this supplement, however, the terminology used in the Standard Rules
has been retained in order to avoid confusion.
9. It should be noted that considerable confusion has arisen concerning the use of
the word handicap. Even if the term is established in many languages, it has
acquired a derogatory, negative and even insulting connotation in several languages,
and should therefore be used with great care.
10. It should also be emphasized that the term prevention, as outlined in the
Standard Rules, must never be used to justify the denial of the right to life or to
equal participation in society for persons who have disabilities.
B. Adequate standard of living and poverty alleviation
11. It is obvious that in developing countries, as in more developed areas, persons
with disabilities and their families are more likely than the rest of the population to
live in poverty. It is a two-way relationship: disability adds to the risk of poverty,
and conditions of poverty increase the risk of disability. Prejudice and social stigma
affect the lives of both children and adults with disabilities and lead to isolation and
exclusion from the life of their communities.
12. The attainment of an adequate standard of living by persons with disabilities is
implied in the principle of equal rights for all and in the process of equalization of
opportunities for persons with disabilities.
13. States should ensure that persons with disabilities receive the support they
need within the ordinary systems of society, such as education, health, employment
and social services.
14. When taking measures to combat poverty, States should include programmes
to support empowerment of persons with disabilities and promote their active
participation in society.
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15. As part of their development programmes, States should also ensure access to
adequate and safe housing, food and nutrition, water and clothing for persons with
disabilities.
16. In the framework of community-based services, States should provide
education, rehabilitation, assistive devices and employment services to persons with
disabilities.
17. States should encourage the collection and dissemination of information on the
living conditions of persons with disabilities and promote comprehensive research
on all conditions affecting the lives of persons with disabilities.
18. In cooperation with local and regional authorities, the Office of the United
Nations High Commissioner for Refugees (UNHCR) and other actors, States should
provide the necessary assistance to homeless persons, displaced persons and
refugees with disabilities, enabling them to attain self-sufficiency and promoting
sustainable solutions to their problems.
19. Organizations of persons with disabilities should be consulted at all levels in
programmes affecting the standard of living of persons with disabilities.
C. Housing, including the issue of residential institutions
20. A prerequisite for full participation and equality is that persons with
disabilities can grow up, live and develop their potential in the community they
belong to. In this context the provision of suitable housing is crucial.
21. States should ensure safe, habitable, accessible, affordable housing and shelter
for all persons with disabilities, adequate for their health and well-being. Such
housing conditions, including the social and physical infrastructure, should enable
children with disabilities to grow up with their parents and should enable adults with
disabilities to be part of the community.
22. Measures should also include awareness-raising campaigns to combat negative
attitudes among neighbours as well as the local population.
23. In countries where the policy has been to house many groups of persons with
disabilities in separate and large institutions States should reorient their policies
towards community-based services and family support. In this way it should be
possible to initiate programmes to stop admissions to such facilities as well as plan
for their ultimate closure.
24. For orphans with disabilities and for other groups of disabled children without
family or other personal support, substitute families should be found. For adults in
the same situation, small family-like facilities (group homes), situated in the
community, should replace large institutions.
25. States should ensure that appropriate support is provided for residents with
disabilities when they leave their residential institutions to rejoin the community,
and that the support services continue for as long as required.
26. With regard to persons still living in institutions, States must ensure that their
basic needs are met, and ensure respect for their right to a private space where they
may receive visitors as well as keep their files, correspondence and other personal
belongings. The treatment of every person should be directed to preserving and
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enhancing personal autonomy. States must also ensure that opportunities for
meaningful participation and involvement in community life occur.
D. Health and medical care
27. Recognizing that health is a human right, States must ensure access to high
quality and safe medical services and facilities for all people, regardless of the
nature and/or severity of impairment, age, gender, race, ethnicity and sexual
orientation. States should recognize that persons with disabilities have the same
right to self-determination as other citizens, including the right to accept or refuse
treatment. States must ensure that the right to life is paramount in the delivery of
medical and health services.
28. States should ensure that persons with disabilities get the same level of
medical care within the same system as other members of society, and do not face
discrimination on the grounds of presumptions of their quality of life and potential.
29. States should ensure that all medical, paramedical and related personnel are
adequately trained and equipped to give medical care to persons with disabilities and
that they have access to relevant treatment methods and technology. To understand
fully what it means to live with a disability, future professionals should meet and
learn from persons with disabilities.
30. Medical and paramedical personnel should give full and balanced information
and advice concerning diagnosis and treatment to persons with disabilities. This is
particularly important in the situation of prenatal diagnosis. In the case of children,
information should be given to parents and, when appropriate, to other family
members.
31. States should design and implement programmes with the full involvement of
women and men with disabilities to give them appropriate and fully accessible
education, information and services to address their reproductive and sexual health
needs.
32. States should raise awareness of, prevent and treat sexually transmitted
infections, including HIV/AIDS.
33. States should ensure that medical facilities and personnel inform people with
disabilities of their right to self-determination, including the requirement of
informed consent, the right to refuse treatment and the right not to comply with
forced admission to institutional facilities. States should also prevent unwanted
medical and related interventions and/or corrective surgeries from being imposed on
persons with disabilities.
34. States should develop national rehabilitation programmes for all groups of
persons with disabilities. Such programmes should be based on the actual individual
needs of persons with disabilities. The training should be based on the principles of
full participation and equality, and aim at the removal of barriers for their
participation in the mainstream of community life.
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E. Emergency situations
35. It has often been recognized that the needs of persons with disabilities are
forgotten or neglected in general relief programmes.
36. In cooperation with concerned United Nations agencies such as UNHCR and
the United Nations Development Programme (UNDP), States should develop
policies and guidelines for the inclusion of support measures with regard to persons
with disabilities in emergency situations. Their emergency services should be
adequately equipped and prepared to provide medical treatment and support to
persons with disabilities and their families.
37. Special attention should be paid to the fact that persons with disabilities are
particularly vulnerable to abuse in emergency situations.
F. Access to the social environment
38. Two dimensions of accessibility are pointed out in Rule 5 of the Standard
Rules: access to the physical environment and access to information and
communication. Experience has shown that it is necessary to include a third
dimension access to the social environment in national disability programmes.
39. States should encourage measures to remove all obstacles resulting from
ignorance and negative attitudes towards persons with disabilities.
40. Measures to combat prejudice should be taken through public education and
information campaigns, awareness-raising and encouragement of a positive
portrayal of persons with disabilities in the media. Particular emphasis should be
given to the gender dimension, to persons with developmental and psychiatric
disabilities, to children with disabilities and to persons with multiple or invisible
disabilities.
41. When planning measures to combat social prejudice, it is of particular
importance for States to ensure the involvement of organizations of persons with
disabilities.
G. Communication issues
1. Information and communication technology
42. Information and communication technologies and infrastructures are rapidly
growing in importance in the provision of information and services to the
population. These technologies must therefore be made accessible and their great
potential to assist and support persons with disabilities must be utilized.
43. States should ensure that information and communication technologies and
service systems offered to the general public are either made initially accessible or
adapted to be made accessible to persons with disabilities. It is also important to
create opportunities for special training courses as well as access to affordable
equipment and software and to distance learning through these technologies for
persons with disabilities.
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44. States should consider presenting accessibility and usability standards and
guidelines as a precondition for public funding and recognize public procurement as
a tool to achieve accessibility.
45. States should initiate the development and use of special technical and legal
arrangements to make information and communication technologies accessible to
persons with disabilities.
2. Sign language
46. During the 1990s an increasing number of States recognized sign language as
the main means of communication for deaf people. In view of the decisive
importance of sign language in the personal development of deaf people, such
recognition must be encouraged worldwide.
47. States should recognize sign language as a natural language and as the medium
of communication among deaf people. It should be used in the education of deaf
children, in their families and in the communities.
48. Sign language interpretation services should be provided to facilitate
communication between deaf persons and others.
3. Other communication needs
49. Consideration should be given to the needs of people with other
communication disabilities, such as the speech-impaired, the hard-of-hearing, the
deaf-blind and persons with developmental and psychiatric disabilities, who require
specific forms of assistance.
50. In addition to information and communication technologies, special assistive
devices and interpreter services may be needed.
H. Personnel training
51. A key element in all programmes and services for persons with disabilities is
to have well-trained and informed personnel. Furthermore, information on disability
and the living conditions of persons with disabilities should be provided to
professional groups serving the general population, such as medical doctors,
teachers and social workers as part of their basic training. In addition to technical
information, professionals should have knowledge of the prevailing attitudes
towards persons with disabilities.
52. States should ensure that all authorities providing services in the disability
field give adequate training to their personnel and that an understanding of the
substance of the United Nations Standard Rules is an outcome of such training.
53. States should ensure that personnel are educated to recognize acts of
discrimination based on gender, ethnicity, race, age and/or sexual orientation against
children and adults with disabilities.
54. States should facilitate training for persons with various types of disabilities so
they may work as professionals in the disability field and serve as role models.
55. Access to continuing education on a regular basis should be available and
encouraged for all persons, groups and institutions concerned with disabilities.
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I. Gender
56. Women with disabilities are often exposed to double, or even triple,
discrimination. They suffer discrimination as women, as disabled persons and on the
grounds of their economic status.
57. In many cultures, the status of women with disabilities is negatively affected
by the fact that they less frequently get married and have children. They are often
exposed to discrimination in medical care and rehabilitation, education, vocational
rehabilitation and employment.
58. The initial sentence of every Rule in the Standard Rules document contains the
term persons with disabilities. This should always be understood as referring to
girls, boys, women and men with disabilities. It is important to emphasize both
gender equality and the inclusion of children and youth, wherever appropriate.
59. In gender-sensitive development programmes, women and girls with
disabilities should be identified as target beneficiaries.
60. Organizations of persons with disabilities should take action to get the
concerns of women and girls with disabilities onto their agenda, and onto the
agendas of womens organizations and organizations representing children.
J. Children with disabilities and the family
61. In some cultures, a disability is often seen as a punishment and is connected
with feelings of fear and shame. Owing to this, children with disabilities may be
hidden away or neglected by the rest of the community. As a consequence it is not
possible for them to live a decent life, and they are sometimes even denied the right
to survival.
62. Children with disabilities are often neglected by the school system. Obstacles
in the physical environment prevent the children from moving around freely, from
playing and from sharing the company of other children.
63. States should initiate programmes for early detection and intervention and
ensure that children with disabilities, including children with severe and/or multiple
disabilities, have access to medical care and rehabilitation services. These services
should be provided without any bias based on gender, age or other status.
64. Training and rehabilitation programmes should not disrupt the disabled childs
right to family life and social interaction with their non-disabled peers.
65. All children with disabilities, including those with severe disabilities, should
have access to education. Special attention should be given to very young children,
girls and young women with disabilities.
66. States should encourage measures that enable children with disabilities to play
and to be together with other children in the community.
67. States should ensure that children, adolescents and youth with disabilities are
entitled freely to express their views on matters of concern to them and to have their
views taken seriously in accordance with their age and maturity.
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68. States should develop adequate support to families who have children with
disabilities, including disability-specific assistance and information, access to
mainstream parent support and possibilities for parent-to-parent exchanges.
69. States should encourage employers to make reasonable adjustments to
accommodate family members responsible for the care of children and adults with
disabilities.
70. States should support women and men with disabilities wanting to pursue a
separation or a divorce owing to abuse or violence.
K. Violence and abuse
71. Studies during recent years have shown that experience of sexual abuse and of
other forms of violence and abuse are frequent among persons with disabilities.
Owing to the special circumstances, such problems are often difficult to discover, as
they may occur in closed environments and are sometimes committed against
children and adults who have difficulty explaining what has happened.
72. States should develop programmes to recognize and eradicate abuse and
violations of girls, boys, women and men with disabilities. It may occur in the
family, in the community, in institutions and/or in emergency situations.
73. Persons with disabilities need to be educated about how to avoid the
occurrence of abuse, how to recognize when abuse has occurred and how to report
it.
74. States should provide information to persons with disabilities and their
families about ways to take precautions against sexual and other forms of abuse.
75. Professionals should be trained how to identify conditions leading to possible
victimization, how to avoid such situations, how to recognize when abuse has
occurred, how to support a victim with a disability and how to report on such acts.
76. Police and judicial authorities should be trained to work with persons with
disabilities so that they can receive testimonies from such persons and treat
instances of abuse seriously. Perpetrators of abuse should be identified and brought
to justice.
77. Special legislative measures may be needed to protect the right to personal
integrity and privacy for children and adults with disabilities, in order to avoid their
exploitation and abuse.
L. Older persons
78. There are two main categories of older persons with disabilities. For those who
experienced their disabilities earlier in life, the needs may change with advancing
age. The other group consists of people who lose physical, sensory or mental
functions due to ageing. With the increase in life expectancy, owing to the general
improvement in the standard of living, this group is growing in number.
79. The Standard Rules do not make any age distinctions. The term persons with
disabilities refers to persons of all ages. However, experience has shown that the
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needs of older persons with disabilities are often not included in national disability
policies and programmes, and therefore some clarification may be appropriate.
80. States should ensure that the needs of older persons with disabilities are
included in the policies, programmes and services designed to meet the needs of
persons with disabilities.
81. Special attention should be paid to the needs of older persons with disabilities
in the provision of health and medical care services, rehabilitation, assistive devices
and other forms of support services.
82. The situation of older persons with disabilities should be included in research,
in the collection of statistics and in the general monitoring of the living conditions
of persons with disabilities.
83. Public information and awareness-raising campaigns should pay attention to
the situation of older persons with disabilities.
M. Developmental and psychiatric disabilities
84. The two groups of persons, those with developmental and those with
psychiatric disabilities, are different in regard to both the origin and the character of
their problems. However, both groups belong to the most vulnerable among citizens
of society. Their disabilities are surrounded with more negative attitudes and
prejudice than most other groups of persons with disabilities. Particularly in
developing regions and in countries with economies in transition, the voice of
persons with developmental and psychiatric disabilities is seldom heard.
Consequently, their needs are often forgotten or neglected when plans are made to
improve the living conditions of persons with disabilities.
85. One of the more serious weaknesses of the Standard Rules is that the needs of
persons with developmental and psychiatric disabilities are not dealt with in a
satisfactory way. Areas such as health and medical care, rehabilitation, support
services, housing conditions, family life and personal integrity are of vital
importance for both these groups. Their needs constituted an important perspective
when these policy areas were elaborated for this supplement.
86. States should ensure that the special needs of persons with developmental and
psychiatric disabilities are respected in health and medical care, and in rehabilitation
and support services. Particular emphasis should be given to issues of selfdetermination.
87. States should develop forms of support for families who have children or adult
family members with developmental or psychiatric disabilities. Such support may be
necessary to make it possible for the disabled person to live with the family.
88. Many adults with developmental or psychiatric disabilities need special
housing arrangements to be able to cope with their situation. Small family-like
facilities (group homes) with sufficient support services, sometimes provided within
the framework of independent living schemes, may be useful alternatives.
89. States should ensure that the situation of persons with developmental and
psychiatric disabilities is included in research, data collection and general
monitoring of the disability field.
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90. States should encourage and support the development of organizations
representing the interests of persons with developmental and psychiatric disabilities,
including self-advocacy groups and parent action groups.
N. Invisible disabilities
91. An important group of persons with disabilities are those who have disabilities
that are not easily discovered by others. This often leads to misunderstandings and
wrong conclusions. Among such groups with invisible disabilities, the following
may be mentioned: persons with psychiatric or developmental disabilities; those
with disabilities from chronic diseases; and those who are hard of hearing or deaf.
92. In public awareness programmes, it is important to include information about
persons with invisible disabilities and the special problems they may experience.
93. It is also important to include the unique characteristics of invisible disabilities
when taking measures towards full participation and equal opportunities for persons
with disabilities.
O. Suggested further initiatives in national policy and legislation
94. As a result of the experience gained in the use of the Standard Rules for a
number of years and as a consequence of the development in the human rights area,
the following general recommendations concerning governmental policy can be
made:
(a) States should introduce comprehensive mandatory anti-discrimination
laws to secure the removal of obstacles to equal participation in mainstream
community life by persons with disabilities. They should ensure the inclusion of
persons with disabilities among indigenous peoples and other minorities in this
process;
(b) States should consider the introduction of mandatory legislation to ensure
the provision of assistive technologies, personal assistance and interpreter services,
according to the needs of persons with disabilities, and those of their family
caregivers, as important measures to achieve equal opportunities;
(c) States should consider the use of public procurement as a tool to obtain
accessibility. Accessibility requirements should be included in the design and
construction of the physical environment from the beginning of the designing
process;
(d) Legislative measures should also be considered to encourage and support
the development of accessibility in transportation systems, housing, and information
and communication services;
(e) States should support and promote the international exchange of research
findings and experiences and the dissemination of best practices in all sectors of
society;
(f) States should take action to include reporting on the situation regarding
persons with disabilities in their periodic reports to the committees of the various
human rights conventions to which they are parties. Information should be gathered
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and submitted whether or not articles in each convention refer specifically to
persons with disabilities. States should support the participation of organizations of
persons with disabilities and encourage them to express their views during the
review process;
(g) Before making decisions on policies, programmes and legislation that
affect the lives of the population generally, consequence analyses concerning the
effects on persons with disabilities should be made.