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Report of the Special Rapporteur 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
Annex:
Reaching the most vulnerable; proposed supplement to the Standard Rules
on the Equalization of Opportunities for Persons with Disabilities
E/CN.5/2002/4 (Back to Main Report)
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 individual’s 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 individual’s 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.
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 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.
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.
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.
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 women’s 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 child’s 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.
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 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 self-determination.
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.
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 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.
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