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United Nations
Disabled Persons Bulletin

Bulletin No 1 of 1997

Introduction

This special issue of the Bulletin is devoted to reporting on the
Global Workshop on Children with Disabilities, which was held at
Washington, D.C. from 5 to 7 February 1997.

The Bulletin also reviews a number of other activities in the
field, including the discussion of the report of the Special
Rapporteur on Disability by the Commission for Social Development at
its thirty-fifth session.

Contents

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Global Workshop on Children with Disabilities.
(Washington D.C., 5-7 February 1997)

Background

The convening of the Global Workshop on Children with
Disabilities was directly related to two resolutions recommended for
adoption by the Economic and Social Council by the Commission for
Social Development at its thirty-fifth session. In the draft
resolution entitled "Equalization of opportunities for persons with
disabilities", the Commission recommended that the Council note with
appreciation the work accomplished by the Special Rapporteur on
Disability of the Commission for Social Development, and decide to
renew his mandate for a further period of three years to continue the
monitoring of the implementation of the Standard Rules on Equalization
of Opportunities for Persons with Disabilities. The Commission
recommended that the Council call for a higher priority to be given to
disability activities within the United Nations system, and urge
Governments to enhance cooperation with the United Nations and non-
governmental organizations to implement the World Programme of Action
concerning Disabled Persons and the Standard Rules on Equalization of
Opportunities for Persons with Disabilities with a view to promoting
integration of persons with disabilities and social services for all.
The Commission also recommended that the Council urge the Secretary-
General and Governments to give full attention to a gender perspective
and to the rights of children with disabilities in all policies and
programmes related to disability, and request the Secretary-General to
include the priority themes of social integration of disabled persons
and social services for all in his reports to the Commission at its
thirty-sixth and thirty-seventh sessions information on relevant
activities of the United Nations system.

In the draft resolution entitled "Children with disabilities" The
Commission recommended that the Council note with concern that a large
number of children have become disabled physically or/and mentally as
a result of poverty, disease, wars and other forms of violence, and
therefore urge Governments to pay special attention to children with
disabilities and to ensure that children with disabilities enjoy the
highest attainable standards of physical and mental health as well as
equal access to education. The Commission also recommended that the
Council request the Special Rapporteur on Disability to specifically
focus on children with disabilities and to establish close working
relations with the Committee on the Rights of the Child, as well to
include in his report to the Commission at its thirty-eighth session
his findings and recommendations on children with disabilities.

The Workshop began as a vision for expanding opportunities for
children with disabilities and their families in developing countries
as they had been expanded in the industrialized world over the past 25
years. Research revealed that mostly invisible and at-risk
population of an estimated 140 million children, 80 per cent of whom
were located in rural communities, were not fully involved in global
social and economic development planning or programming.

Under the leadership of the Disabilities Studies and Services
Centre, a task force at the Academy for Educational Development
researched and prepared a concept paper entitled "Children with
disabilities: the world's promise" in February 1996. Seed money from
the Dole Foundation for the Employment of People with Disabilities
financed the concept paper and its use as the underpinning of
discussions with donors, international nongovernmental organizations
(hereafter NGOs), government representatives, practitioners, parent
organizations and disability advocates worldwide. Those discussions
led to a partnership of organizations to sponsor the Workshop. The
sponsors that provided resources to implement the Workshop and to
include participants from developing countries to attend the Workshop
were:

Collaborating organizations which also supported participants
from developing countries and technical assistance in the planning of
pre-workshop and/or workshop sessions were:

The Planning Committee met in June 1996 to define the framework
for the Workshop. The original two-day format was expanded to include
two additional days of pre-workshop training activities to be
organized by several of the collaborating organizations and the
Academy for Educational Development. Those activities were designed
specifically for participants from developing countries to assist them
in:

^Return to top.

Opening and guest statements

Mr. Stephen F. Mosley (Academy for Educational Development)

Mr. Stephen F. Mosley, President and Chief Executive Officer of
the Academy for Educational Development, opened the session with the
following remarks about why such a workshop was being convened.
"Children with disabilities and their families," he said, "need to be
included in the schools and communities in which they live. They need
to participate as fully as possible if communities and nations are to
thrive. Enormous strides have been made in the last decade to improve
the life chances and health of children, notably through work on child
survival carried out by UNICEF under the leadership of the late Tim
Grant.

"To bring about and fully achieve economic self-sufficiency along
with full participation of the community, we need to assure that
children with disabilities have opportunities for education and
employment. Children with disabilities and their families should and
must participate in - that is, contribute to - in order to enjoy all
aspects of the civic life of their communities.

"There are a number of things that have to happen to assure that
children with disabilities and their families have access to education
and employment opportunities. We need information and knowledge to
change public attitudes and awareness; community support to coordinate
services and resources; and a public policy agenda that assures both
of these are present in every community.

"We have made some progress in the United States of America in
the past 25 years and you will hear about some of those success
stories over the next three days. In addition, there have been some
outstanding success stories going on in developing countries, some of
which you've already begun to share and will continue to hear about
for the next three days.

"To make this a global phenomenon, it will take extraordinary
collaboration and partnerships from developing and post-industrial
nations, donors and practitioners, Governments and community leaders,
parents and service providers, and the most important voice - that of
the disability community itself. We have with us today just such a
diverse and impressive group: over 25 countries are represented here
today, and within that group, there are 31 advocacy groups, including
officials from seven Governments and representatives from 17 non-
governmental organizations and 14 bilateral and multilateral
development assistance organizations.

"The Academy's interest in this issue comes from over 25 years of
development assistance in the developing world, coupled with a new and
deep commitment to disabilities as seen in our Disabilities Studies
and Services Centre. We are pleased to be the Convener of this Global
Workshop, and over the past year, have worked in close partnership and
collaboration with a number of bodies, 1/ all of which made a
significant contribution."

Ms. Carol Valdivieso, Vice President and Director, Disabilities
Studies and Services Centre, Academy for Educational Development, then
introduced the four guest speakers representing the workshop's
sponsoring organizations: Ambassador Benny Kimberg (DANIDA), Ms. Fay
Chung (UNICEF), Mr. John Langmore (United Nations Secretariat), and
Ms. Judith E. Heumann (United States Department of Education). Each
speaker addressed the theme "Why are we here? Children with
disabilities and their families: Reaching full participation in global
economic and social development", as set out below. 2/

----------
1/ See lists contained in background above.

2/ A copy of Ms. Heumann's statement was not available for publication.

^Return to top.

Ambassador Benny Kimberg (DANIDA)

"Thank you for the invitation to address this conference.
Denmark, for one, is very pleased with the initiative taken by the
Academy for Educational Development to convene the Global Workshop on
Children with Disabilities with the overall aim of reminding all of us
about the world's promise to children and their families.

"It is indeed gratifying that so many sponsors and agencies have
come together to support this initiative. The participants represent a
wide range of actors: non-governmental organizations and Governments
from developing and industrialized countries, and international
agencies. I am especially pleased to see that so many representatives
from organizations of and for people with disabilities have come to
this Workshop. Without their input, this Workshop would not be able to
attain its goals.

"Denmark has supported this Workshop since the initiative was
first brought to our attention - with funding and with participation
in the planning, and by bringing to the workshop representatives from
the ministries of education in Uganda and Nepal - who are our
partners in DANIDA - supported programmes for children with special
educational needs in the two countries. In the short period since
1989, significant declarations and documents have emphasized the
rights to education and protection of children with special needs.
They are:

1. The Convention on the Rights of the Child adopted by the General
Assembly of the United Nations (l989). Universal ratification in 1995 (I
believe only 3 countries are still outstanding).

2. The World Declaration on Education for All and Framework for Action
to Meet Basic Learning Needs, adopted by the World Conference on
Education for All, at Jomtien, Thailand, in 1990.

3. The Standard Rules on the Equalization of Opportunities for Persons
with Disabilities adopted by the United Nations General Assembly, in
December 1993.

4. The Salamanca Statement and Framework for Action on Special Needs
Education, adopted by the World Conference on Special Needs Education:
Access and Quality, at Salamanca, Spain, in June 1994.

5. The Copenhagen Declaration and Programme of Action adopted by the
World Summit for Social Development at Copenhagen in March 1995.

"In the Convention on the Rights of the Child adopted by the
United Nations in 1989, it is stated (article 23) that a child with
disabilities has the right to special care, education and training to
help him or her enjoy a full and decent life in dignity and achieve
the greatest degree of self-reliance and social integration possible.
The right to education for all children was emphasized in the World
Declaration on Education for All. Those views are further underlined
in the recent Salamanca Statement and Framework for Action on Special
Needs Education, in which it is stated that schools should accommodate
all children regardless of their physical, intellectual, social,
emotional, linguistic or other conditions. This should include
disabled and gifted children, street and working children, children
from remote or nomadic populations, children from linguistic, ethnic
or cultural minorities, and children from other disadvantaged or
marginalized groups.

"Denmark has been actively involved both in the Education for All
Declaration and in the follow-up World Conference on Special Needs
Education, and is now in different ways involved in implementation of
the principles stated in those and other declarations concerning the
education and protection of all children. Evidently, it is one thing
to agree to forward-looking and progressive principles, and another
thing to ensure their implementation. Often, the distance between the
decision makers and the target groups at grass-roots level who are
expected to benefit from those principles is very far indeed, and many
steps must be taken to reach them.

"I am pleased to note that in the planning of this Workshop, care
has been taken to involve participants not only from different parts
of the world but also with different functions: donors and recipients,
multilateral and bilateral donors, decision makers and people
responsible for implementation, various non-governmental organizations
for and of people with disabilities, donors and agencies who have
already started to integrate children with disabilities and children
in especially difficult circumstances in their programmes, and others
who want to do so after this Workshop. Formal and informal networks
and considerable exchange of experience will no doubt be one important
outcome of this workshop. As to a more focused follow-up, I understand
that a meeting of the workshop planners has been scheduled to take
place right after the conclusion of the workshop. I welcome that and
hope that it will be possible to agree on a focused follow-up to the
workshop, both in the short and the longer term.

"Let me now turn to Denmark's policy for children with
disabilities and their families in developing countries. In 1994, the
Government of Denmark approved its strategy for Danish development
policy towards the year 2000. According to this strategy, Denmark
particularly focuses on combatting poverty and on the most vulnerable
and hardest to reach groups in each country. Certainly, children and
adults with disabilities are among the poorest and most vulnerable
groups in developing countries, and therefore clearly a target group
within the new strategy.

"Danish bilateral assistance in this area is now changing from
support to a number of projects in a given country to programme
support in more comprehensive areas or sectors in order to achieve a
more significant and lasting impact on development in our partnership
countries. Primary health care and education are two of the sectors
given high priority in the new Danish strategy. Both sectors have
direct and indirect importance for prevention of disabilities and
rehabilitation of disabled children and their families. As sector
programmes in health and education are being developed for our
partnership countries, children with disabilities and children in
especially difficult circumstances, often described as children with
special needs, will become a natural, integrated part of these
programmes.

"On the multilateral side, Denmark is a strong supporter of
UNICEF. As a member of the Executive Board of UNICEF, Denmark in June
1996 endorsed the review of UNICEF policies and strategies on
childhood protection. That paper aims to translate into active UNICEF
policy the guiding principles of the Convention on the Rights of the
Child for the overall protection of childhood. Let me add that it does
so very successfully. In order to assist UNICEF in integrating the
child protection strategy into its policies and different sector
programmes at headquarters, regional and country level, Denmark has
decided to offer increased technical and other assistance by providing
a senior expert in childhood disability to UNICEF.

"As for Denmark's own experience in this area, Denmark has a long
tradition for taking care of its citizens, not least the particularly
vulnerable ones. Our health care, social and educational systems
include all citizens, including people with disabilities. We have
spent a long time in developing our welfare society. Although Danish
people often complain about their high taxes, there is general
agreement that we want to maintain a society where there is room for
everyone and where everyone is entitled to needed help and support.
Naturally, this system is not without problems, and adjustments must
be made according to changing needs and conditions, but there is now
in the Danish population an almost general agreement that not only can
we afford but we also feel obliged to help people and countries in
other parts of the world, not only with technical development but in
the areas of human development as well.

"Danish development assistance to developing countries has always
included the health and medical areas. We have now provided support to
education in different projects in many countries as well as
individual special education projects. Recently, Denmark started
supporting education and rehabilitation projects for children with
special needs in some countries of the former USSR. Over the last 10
to 15 years, DANIDA has supported the development of special education
programmes in Kenya, Uganda, Nepal and Mongolia, in collaboration with
their respective governments. Special education is being developed as
an integrated part of the existing education system. The four
programmes are based on the different circumstances and needs in each
country and are therefore not identical in their structure, but over
the years a number of lessons have been learnt, some good and some not
so good. Changes have been made and broader, more comprehensive target
groups have been included, such as children with special needs (0-18
years).

"Denmark is among the countries with most experience in
developing special needs education programmes in developing countries.
Often, Denmark finds itself the only donor of a special needs
education programme, but we are ready to collaborate with other donors
and to share our experiences with any donor or agency that want to
share our experiences.

"Improvement of basic and primary education is becoming a
priority area of Danish assistance to developing countries. Special
needs education is seen as an integral part of this. Children with
special needs (0-18 years) include children with disabilities and
learning difficulties, children in especially difficult circumstances
and children at risk in accordance with the Salamanca and other
international declarations. Early identification and intervention are
seen as a part of all the programmes.

"The DANIDA approach to special needs education is defined as
programme support for development. The intention is that the programme
will set in motion a number of processes that can be continued and
sustained after DANIDA support ends. The aim is to develop a
nationwide coverage for special education as part of the regular
education system. DANIDA recognizes that development of a national
special needs education system as part of the regular education system
will take a long time, and therefore plans support to special needs
education programmes over a long time period, possibly 10 to 15 years.

"All DANIDA-supported special needs education programmes
emphasize that children with special needs should be taught together
with their peers in regular classes or schools within their regular
education system. The concept of "inclusive schools", where all
children are accepted and kept in the local school and promoted with
their peers, is still very new to administration, headmasters and
teachers in the ordinary schools in developing countries, as it is in
many industrialized countries. However, it is being recognized that
this is the only model that will be able to reach the majority of
children with special needs. The participants from Nepal and Uganda
who are our partners can, of course, describe in much more detail our
joint efforts to include children with special education needs in
mainstream education in the two countries. Our consultant can also
tell you about experiences from Kenya and Mongolia.

"One of the most crucial factors in development of special needs
education programmes in any country is the availability of
professional expertise. Therefore, one of the main components in the
programmes is technical capacity-building, ranging from general
awareness-raising to training of teacher trainers and researchers at
university or special education institute levels. Continued in-service
and upgrading training of teachers is one important key to sustaining
quality in such programmes.

"Availability of specially prepared, professionally sound and
appropriate materials is a key element in development of a special
needs education programme. Such materials are both needed as part of
technical capacity-building and for children with special needs. This
is one of the lessons learnt by DANIDA, and materials development has
now become a focal point.

"Collaboration with non-governmental organizations: Collaboration
with national and international non-governmental organizations is seen
as an important element in assisting the development of sustainable
programmes. This can be done in a variety of ways. DANIDA itself has
increased its support to people with disabilities through cooperation
with the Danish Council of Organizations of Disabled Persons,
supporting a special adviser who assists the Council in identifying
areas where Danish organizations can provide expertise and support to
disabled people in developing countries. This programme has proved to
be very effective. An interesting model for cooperation with non-
governmental organizations is being tried in Nepal, where DANIDA
supports a three-year project for the deaf and hearing-impaired
persons, carried out by the Danish Association of the Hearing-Impaired
through the Nepal Association for the Deaf, together with other non-
governmental organizations. There is close cooperation between this
project and the special needs education programme, whose leaders are
participating in this Workshop. No special needs education programme
can be successful without the support of parents. If parents do not
understand and therefore do not support the special needs programme,
it is not likely to succeed. Involvement and education of parents
should be directed not only at the parents of children with
disabilities but at the parents of all children in a school to
increase their understanding, overcome resistance and gain their
support for the programme. Therefore, cooperation with parents and the
community is a central part of the special needs education programmes.

"Let me conclude by referring to a special DANIDA publication on
the Education Assessment and Resource Services (EARS) programme in
Kenya for the Rehabilitation International conference in 1992,
entitled, "Afford it? But of course!" The question is still asked
frequently from many sides: Why help children and adults with
disabilities when so many non-disabled also need support? The Danish
answer is still "but of course." Gradually, more developing countries
are realizing that they cannot afford not to help children with
special needs and their families to be part of the global and social
development. With early identification of special needs and
appropriate intervention and support, the majority of children with
special needs will become useful and independent citizens in the
society and be able to live a productive and independent life. This is
their right, our responsibility and the world's promise."

^Return to top.

Ms. Fay Chung (UNICEF)

"In the past few decades, the United Nations has adopted a number
of international human rights instruments applicable to children,
including children with disabilities. Among these is the legally-
binding Convention on the Rights of the Child (1989), now ratified by
188 countries. Article 23 specifically calls on States Parties to
recognize the special educational, training, health-care,
rehabilitation, recreation and employment needs of children with
mental or physical disabilities. Other instruments of a non-binding
nature are the World Declaration and Plan of Action for the World
Summit for Children (1990), the World Declaration on Education for All
( 1990) and the International Special Education Conference in
Salamanca (1994). During 1996, as the organization marked its fiftieth
Anniversary, UNICEF has taken a number of important steps to renew its
commitment for the overall protection of children.

"UNICEF has formulated its Mission Statement, which was adopted
by the Executive Board on 22 January 1996. The Mission Statement
affirms that UNICEF is committed to ensuring special protection for
the most disadvantaged children - children who are victims of war,
disasters, extreme poverty, all forms of violence and exploitation and
those with disabilities. In the light of the standards of the
Convention on the Rights of the Child and its Mission Statement,
UNICEF has reviewed its policies and strategies on child protection.
In June 1996, the Executive Board adopted a new policy entitled
"Children in need of special protection measures." It is in line with
this commitment that UNICEF is participating in this Global Workshop
with a view to improving the situation of some of the most neglected
children in developing countries, those with disabilities. These
children suffer from the double disadvantages of underdevelopment
combined with the lack of suitable provision for their educational
needs, and lack of access to rehabilitation, and play and recreational
activities. Basic education is an inalienable right of every child.
Today, large numbers of children with disabilities do not enjoy this
basic human right, and UNICEF reiterates its commitment to support the
attainment of education for all children as a major global goal.

"Prevention of disability is among the highest priorities for
UNICEF programmes. UNICEF remains committed to the reduction of child
and maternal mortality and morbidity through poverty reduction,
universal immunization, reduction of malnutrition and elimination of
micronutrient deficiencies, and access to basic education. Many
disabilities are caused by malnutrition and micronutrient
deficiencies. Through UNICEF nutrition and parenting education
programmes, parents are educated to ensure that they prevent
disabilities among children and women during the critical pregnancy
period. UNICEF believes that prevention should be the first line of
action, because many disabilities are preventable.

"For the world's estimated 150 million children who are already
affected by disabilities due to a variety of preventable causes
ranging from disease, malnutrition, natural and man-made disasters,
armed conflicts and landmines, UNICEF calls for a policy of
community-based prevention and rehabilitation, early detection of
impairments, and timely intervention to prevent progression to
disability and handicap. The policy also calls for facilities and
amenities to be designed in such a way as to include children with
disabilities. Children with disabilities should be included in
ordinary schools, wherever possible. The development of low-cost and
durable prosthetics is needed.

"In the course of this Workshop you will hear about a number of
UNICEF - supported programmes in Asia, Latin America and Africa. Mali
and Ghana provide good examples of partnership collaboration. Nepal
and China provide examples of community-based approaches that are well
worth examining. Two good models of national community-based
rehabilitation (CBR) programmes with working mechanisms for capacity
building and training are underway in Indonesia and Sri Lanka.
Indonesia also offers excellent models for assessment and early
identification of disability among young children. Jordan, Oman, Egypt
and Zambia have developed CBR models and training materials for
community workers in collaboration with UNICEF. In Belize, through an
initiative of the Ministry of Education supported by the United
Nations Educational Scientific and Cultural Organization (UNESCO),
UNICEF is facilitating reintegration and main streaming of children
with disabilities in the local schools. Teaching modules are designed
to meet the special needs of children with learning disabilities. In
Jamaica, the education programme has been redesigned to improve
quality and expand coverage of children, with special attention to the
education of children with disabilities in pre-schools and primary
schools. UNICEF Romania is facilitating capacity- building and
training through experience exchange and participation in
international seminars. In Namibia, a joint initiative of UNICEF, the
World Health Organization (WHO), UNESCO, and the International Labour
Organization (ILO) has began to create awareness among different
ministries and develop guidelines for expanded collaboration.
Assistance to strengthen organizations of parents have been provided
in Central America. In Nicaragua, parents of children with
disabilities were organized to create awareness in the community for
education of children with disabilities.

"Problems and solutions in dealing with landmines and landmine
injuries come from Afghanistan, Angola, Bosnia and Herzegovina,
Cambodia, El Salvador and Mozambique. UNICEF has emphasized the need
to ban landmines. Landmine awareness, education and landmine clearance
programmes have been carried out in countries affected by armed
conflict. In addition, UNICEF has also developed closer collaboration
with organizations concerned with prosthetics and orthotics for
children with disabilities.

"UNICEF knows from experience that it is essential to work in
partnership with other agencies if any degree of success is to be
achieved. It is important that this Workshop has brought together such
partners as the World Bank, DANIDA, United Nations Agencies, the
African Development Foundation, private foundations, non-governmental
organizations and academic institutions. It has also brought together
key players from the industrialized as well as the developing world.
This provides an opportunity to consolidate a partnership for action
where parents and members of the community take their place alongside
governmental agencies and potential donors.

"In conclusion, we hope that the Workshop will ensure that its
recommendations are practical and realistic. Strategies that are
adopted need to be simple, innovative, cost-effective and community-
based. We want to place even greater emphasis on preventive measures,
early identification and early intervention, with full parental
participation and active support from the community. This is a
challenge that we can and must meet as we move closer towards the
twenty-first century. Our experience over the past 50 years has proven
to us that sustainable progress is achievable, given political
commitment, adequate resources and community mobilization. In
addition, the underlying causes must be analysed and sound policies
and programmes formulated and implemented. Our resolutions must be
achievable, and must be time-bound and measurable so that we go beyond
the stage of wishful thinking and move into the stage of practical
implementation."

^Return to top.

Mr. John Langmore (United Nations Secretariat)

"The Division for Social Policy and Development of the United
Nations Secretariat is very glad to have this opportunity to
participate in the organization of the Workshop with the Academy and
with our UNICEF colleagues. The question of children with disabilities
is a major area of concern in the World Programme of Action concerning
Disabled Persons and a number of other international instruments as
well. The Division is also glad to be taking part in this important
technical exchange and dialogue. This will not only improve our own
work but contribute to strengthened and expanded networks among
interested constituencies for children with disabilities.

"My statement is in three parts. I would, first, like to review
and comment briefly on the international instruments which provide a
basic framework for the design of strategies, policies and programmes
in the field of disability. I would, second, like to provide a brief
introduction to the activities of the Division concerning global
disabilities policies and programmes. And I would, third, like to
share with Workshop participants certain lessons that the Division has
learned in the field of disability policies and programmes.

"United Nations concern with issues related to disability is
rooted in its founding principles. The Preamble to the Charter of the
United Nations reaffirms the faith of the international community in
fundamental human rights, in the dignity and worth of the human person
and in the equal rights men and women, and in the promotion of social
progress and better standards of life in larger freedom.

"The Universal Declaration of Human Rights, adopted by the United
Nations General Assembly in 1948, has provided a philosophical basis
for the development of legislation concerning disabled persons. The
Declaration states that all are equal before the law and are entitled
without any discrimination to equal protection of the law. Article 25
of the Declaration recognizes that everyone has the right to security
in the event of unemployment, sickness, disability, widowhood, old age
or other lack of livelihood in circumstances beyond his control.

"The International Covenant on Civil and Political Rights and the
International Covenant on Economic, Social and Cultural Rights,
together with the Universal Declaration, provide the foundation for
equal treatment and protection of persons with disabilities to
exercise their civil, political, social and cultural rights on equal
terms with nondisabled persons. In 1989, international protection of
the rights of children culminated in adoption of the Convention on the
Rights of the Child, which promotes the best interest of the child
(article 3(1)).

"The United Nations has accorded special attention to the
question of the rights of disabled children, which is reflected in
recent declarations and guidelines adopted by the General Assembly to
promote the rights of persons with disabilities. The World Programme
of Action concerning Disabled Persons was adopted by the United
Nations General Assembly in December 1982. The Programme of Action has
as its basic goal full participation of persons with disabilities and
equality. It contains a declaration of principles, sets forth policy
options and outlines a long-term plan to enhance disability
prevention, rehabilitation and equalization of opportunities of
disabled persons to further their full and effective participation in
development at all levels-national, regional and global. The
guidelines for action elaborated in the World Programme focus on the
importance of approaching disability issues from a human rights
perspective and of incorporating these issues into the development
mainstream.

"The Standard Rules on Equalization of Opportunities for Persons
with Disabilities seek to provide guidelines for efforts by
Governments to further opportunities for equal participation of
persons with disabilities in all aspects of society. The 22 rules,
listed in the annex to General Assembly resolution 48/96, represent
practical tools to improve the quality of life, livelihood and
well-being of persons with disability, and focus on removal of
barriers to their full and effective participation in social and
economic development.

"The World Summit for Social Development reflects the commitment
of the international community to the principle of people-centred
development, which also means a children-centered and children with
disabilities-centered process of development. The World Summit for
Social Development, in adopting the Copenhagen Declaration and
Programme of Action, reiterated the principle of people-centered
development for achieving the goals of social development. Focusing on
the most vulnerable in special and difficult circumstances, the Summit
was instrumental in putting the Child's Perspective, as defined in the
Convention of the Rights of the Child, into the context of social
development. The Summit urged the international community to (1)
protect children with disabilities from the negative impact of various
political, social and economic problems and (2) ensure that children's
basic and special needs be met through setting essential policies and
enforcing mechanisms in place in order that physical and social
barriers that prevent children with disabilities from fully
participating in social development be removed.

"After this brief review of the international instruments
relating to disability, it is fair to ask how the Division relates to
the scheme of things, what it does and what its priorities are . As
focal point in the United Nations system on disability, the Division
organizes its work with reference to four principal clusters of
activities.

"First is the critical importance of an appropriate policy
framework for supporting effective planning and programming in the
field of disability. Policy content reflects relative priority. Since
child disability is a cross-sectoral issue, policy guidelines provide
a framework for consultation and cooperation across organizational
boundaries. For this reason, the Division attaches priority in its
work to supporting intergovernmental policy processes.

"Second is the need for a multilevel institutional framework that
effectively links consultation and coordination of policy and
planning-level decisions, for action at programme budgeting and
administrative levels and for programme implementation among civil
society. Policies and plans obtain content through current and
reliable data, in which informed and empowered beneficiaries can make
essential contributions. Policy development and plan implementation
depend upon resources available, which would presuppose an appropriate
fit between needs, priorities and resource capacities. The voluntary
fund has supported a number of national and subregional workshops on
national disability committees, and the Division has produced
technical guidelines on the question.

"Third is the issue of conservation of resources to ensure
sustained programme implementation. Our experience suggests that the
way in which resources are organized and delivered is as important to
programme implementation as is the nature of those resources. The
Division has found that making programme and project agents - both
governmental and nongovernmental - responsible for the seed-money
grants from the voluntary fund can result in significant and
multiplier effects for programme implementation and impact among
intended beneficiaries. Grants from the voluntary fund have recently
yielded on average five times as many resources for action in the
disability field.

"Fourth is an essential need to inform and engage civil society
concerning issues and trends in the field of disability, which has
implications for both outreach and networking among interested
constituencies. It also suggests a need to document and disseminate
widely the lessons of these experiences.

"As the international community has launched a new commitment to
social development in its efforts to create a just and equitable
society for all, guided by the principles of the Charter of the United
Nations and by international agreements reached at recent
international conferences, especially the World Summit for Social
Development, the Fourth World Conference for Women and the World
Summit for Children, a new era of international partnerships that
places needs, rights and aspirations of people, including children
with disabilities, at the centre of our decisions has begun.

"Our Workshop today represents an important part of that process
of renewal of commitment to create a society for all, and a
determination to place children with disabilities at the centre of our
efforts. Let us continue our efforts to remove the physical and social
barriers that prevent children with disabilities from participating
fully in social life and development."

^Return to top.

Working Group Sessions

Participants were assigned to Working Groups I to V, each with a
multi sectoral representation, to foster dialogue on specific
questions posed by the facilitator. Each group was reminded of the
overall workshop goal: to promote a multisectoral dialogue in order to
secure and expand opportunities for children with disabilities and
their families to be included on equal terms in global, economic, and
social development.

^Return to top.

Working Group I: Family Involvement for Children with Disabilities

Working Group I identified several resources that it felt
families need to overcome obstacles and become equal participants in
their nations'social and economic development. Information - getting
it, sharing it and using it - was identified as crucial to families.
They viewed information as power and having it as enabling families to
articulate better their needs and those of their children with
disabilities. Several kinds of information were identified: (a) about
one's child, (b) about his/her rights as a human being and citizen, (c)
policies and laws that affect people with disabilities,
(d) research and best practices/models, (e) resources available to
families, (f) about other children and families like one's own, and
(g) knowledge of disability-rights movement.

Second, the group listed specific supports to families, giving
them the local, positive strength they need to be advocates for their
children and themselves. These included:

(a) Recognition of families as experts-acknowledgement of their
natural and cultural strengths;
(b) Networking opportunities;
(c) Peer support-creating community-based support groups;

- Modelling by adults with disabilities for children with special
needs and their families;
- Specific resources and concrete information needed to help
raise their child with a disability, at home or in the community.

Another resource acknowledged was organizational skills, such as
concepts and practices for parents/families that encourage the
formation and development of family associations at all levels
(community, State, regional and national). Finally, the group stressed
the need for families to be viewed as experts and partners. In a large
number of arenas - policy, medical, social and educational - families
need help in becoming viewed as informed decision makers along with
professionals and politicians. Families need to be accepted as equal
partners, working with professionals and politicians to improve
opportunities for their children with disabilities.

Strategies recommended to make disability issues a consistent
part of national and intemational development agendas were:

(a) Press nations and organizations to implement the Standard Rules;
(b) Use the media and other information mechanisms to alter the
attitudes of
(i) Professionals and politicians - those in power in
social and economic arenas;
(ii) Families themselves - helping them to see that the
have the right and strength to be the centerpiece of
action and advocacy for their children;
(iii) Societies so that they recognize both the rights
and potential of children with disabilities.
(c) Change the policies of nations and organizations - mandates,
laws, and programme guides that are the framework within
which decisions about allocation of social and economic
resources are made must be altered to include equal
opportunities for children and families with special needs.

As a result of these strategies, specific actions which need to
be taken to affect decision making were:

(a) Develop partnerships within nations - forge them with
natural support groups, other families, the disabled
community, professionals, policy makers and implementers,
and other nations;
(b) Get a seat at each nation's political table - accomplish
this through:

(i) Leadership and advocacy training;
(ii) Recognizing that families have the right to
participate in decision - making affecting their
children;
(iii) Putting families on consulting boards at all
levels;
(iv) Have family members run for public office and
become part of the power structure;
(v) Require donor organizations to make sure family
perspective is included in the funding request
process, and that families will remain as partners in
project implementation phase.

In summary, the group suggested that others:

(a) Recognize the unique expertise that families bring;
(b) Invest in empowering families to be effective advocates for
their children;
(c) Acknowledge that no success can be achieved in meeting needs
of children with disabilities without a role for families;
(d) Promote the development of grass-roots leaders to help other
families;
(e) Acknowledge that families are a natural support system to
other families-develop opportunities for them to network,
learn from one another;
(f) Acknowledge that families must be involved at all levels of
decision-making and of implementation about programmes for
their children.

^Return to top.

Working Group II Coordinating services for economic development

Mr. Sulemana Abudulai Ghana Action on Disability in Development
served as Rapporteur and began by noting the Working Group's
composition: seven non-governmental organizations in Asia, Africa,
Europe and the United States; six government ministries or
departments, and universities; two international disability
organizations; and six donor agencies. He then described the barriers
and challenges facing disabled persons that the Working Group had
identified:

(a) Social barriers, including religious attitudes, which
fragment communities are further promoted by donor focus-disability,
gender, religion;
(b) Emotional barriers - disabilities are not part of everyday
life, invisibility breeds low self-esteem;
(c) The gap between national policies and local realities - ranging
from difficulties in implementing legislation to building trust at
all levels, truly sharing responsibility for disabled persons.
(d) "Navel gazing" - cooperation among donor agencies,
Governments and advocacy groups is eventually stifled by
inward-looking organizations;
(e) Inertia - it takes energy to move from the status quo;
(f) Inappropriately trying to place Western models into
non-Western areas - square peg in a round hole syndrome;
(g) Outcome - oriented curricula and programmes - need for
coordination with labour, business, employment needs of the
community as school/training programmes are being developed;
(h) Fickle interests of donors - tend to support "hot" topics,
constantly changing focus, resulting in a lack of continuity;
(I) Failure to recognize and use community resources - donor
community needs to recognize existing strengths of the local
community and to build the capacity of the local community in
order to insure programme sustainability.

The Rapporteur noted that the discussion reflected introspection on
the part of the various sectors represented in the room. For example,
in many cases these comments were brought up by the very
representative whose group was being criticized.

The Working Group began by considering the current view of
service delivery, which sees agency resources at the centre, with
channels for services to be delivered out to individuals and groups in
the community. However, the Working Group abandoned this model in
favour of one that placed the child at the centre, surrounded by
resource agencies, non-governmental organizations, community-based
groups, all linked in a system that fostered their continuous
collaboration.

The Working Group discussed and presented several ideas for how
to move beyond these obstacles. They suggested that:

(a) Donors focus on building the capacity of communities and
local and government officials to meet their needs develop
policies and sustain programmes;
(b) All sectors form cells of partners in each community;
(c) Donors and community representatives decide jointly on projects;
(d) Annual meetings of area donor organizations be conducted;
(e) Content - specific workshops at both the country and local
levels of all stakeholders non-governmental organizations, family
groups, disability organizations, government agencies) be
conducted;
(f) Programmes be developed to offer help and support to the
siblings of children with disabilities, as well as the children
of disabled people;
(g) Networking among grass-roots level groups - voices from the
people - be promoted;
(h) Donor groups stimulate/train localities to recognize their
own needs and to develop plans to request support for these
needs;
(I) Donors train government-level personnel to appreciate
information and requests from the local level and respond to
grass-roots needs;
(j) Facilitate non-governmental organizations and Governments
together, sponsoring workshops around certain themes so proposals
can be developed;
(k) Donors facilitate Governments in holding national and local
conferences on children with disabilities, and invite all groups
to attend, i.e., groups in the areas of transportation, health,
labour, women's groups and education;
(l) Donor education seminars be held in countries for donors
working in that country;
(m) Donors collaborate together to meet needs identified in the
country;
(n) Documentation of needs be developed, including training to
appreciate the importance of accurate data, research needs,
regional information/resource centres and a hierarchy of
information needs.

The Rapporteur concluded by stating that the Working Group was
willing to make a series of commitments in response to the question,
"What do you commit to change when you return to your country?" The
commitments included:
(a) Networking regionally to continue steps begun here to share
and help each other;
(b) Strengthen voices of parents;
(c) Facilitate the formation of parent associations.

^Return to top.

Working Group III "Coordinating services for social development"

The Working Group rapporteur, Penny Platt, (University of
Manchester), explained that one of a series of questions considered by
the Working Group in its discussions was "How will we know when
disability issues are squarely on the agenda for social development?"
Two frank responses were: "When the Executive Director of UNICEF
attends this conference" and "when in my country, disabled people have
a life like the others." These two responses lead to the Working
Group's goal(s) achieving of full, equal recognition, and value of
people with disabilities.

What suggestions did the Working Group make for achieving these
goals? The two key words underpinning everything and central to every
level of initiative were collaboration and cooperation:

(a) On raising awareness of the rights and needs of disabled
people throughout society;
(b) On supporting the capacity-building of disabled peoples'
organizations;
(c) Between organizations of people with disabilities, parents and
professionals (and recognizing the inclusion in many regions of
parents within organizations of disabled people).

Given these strategies, the Working Group considered ways to
bring about this level of collaboration:

(a) Conferences as wide ranging as this one should be held
within recipient countries, thus facilitating both intra-country and
pan-regional development;
(b) Nationally, it is useful to create an umbrella organization
of interested organizations;
(c) Parents of children with disabilities need encouragement and
resources to work together to support each other and disabled persons;
(d) Organizations of disabled persons need to reach and support
disabled people not only in towns but also in rural areas (where it is
estimated that 80 per cent of them live);
(e) Professionals need disability awareness training on the
issues, the importance of reciprocity, and in preparation for service
implementation;
(f) Disabled children should have the expectation and training to
provide them with work in adult life, and Governments should be
supportive of efforts to achieve this;
(g) Adolescents should have their own organizations reflecting
their needs, such as the Young People First organizations in the United
Kingdom;
(h) Organizations should join forces to advocate for disability
rights within any and every discussion of child/human rights;
(i) Strengthen coordination and communication among organizations
and countries, as well as among United Nations agencies;
(j) Establish an interministerial committee/coordinating body to
exert pressure on the respective ministries involved with disability
issues within a given country; and, better still, a goal still to be
achieved in most countries, every ministry should hold a briefing to
act on disability issues which fall within its jurisdiction.

If the above is achieved, it will promote the three key building
blocks: (a) training, based on (b) information exchange and (c)
experience exchange. But only when we are all understanding together,
when we are with disabled persons and not merely for disabled persons,
can we start to really, effectively and seriously bring disability
equality into social development.

The Rapporteur contributed her personal perspective to summarize,
including children with disabilities in community resource allocation
and social development, using her own descriptors for "CHILD":

Collaboration, cooperation, communication and coordination;
Health and education need to work closely;
Include disability issues in every Ministry;
Life is of equal value, no matter whose it is;
Disability, a dimension to every dialogue.

The Rapporteur remarked that within the Working Group there was
evidence of a willingness to begin to make commitments to next steps
(reported above). However, time did not permit the entire Working
Group to discuss these thoroughly and make them part of its
presentation to the final general session.

^Return to top.

Working Group IV Public awareness and information sharing

During both the pre-Workshop activities and the concurrent
presentations, participants from developing countries made clear that
they were in search of technical information and financial support.
They noted that the Western participants seemingly had little idea of
the circumstances facing agencies for disabled children in developing
nations. Therefore, this Working Group began with an exercise that
enabled representatives from India, Uganda, El Salvador, Cambodia and
Mexico to present in their own terms the home country situations they
face.

Throughout its discussions, the Working Group tried to balance
the need for external resources, such as financial aid and technical
assistance, with the need to maintain a sense of local control over
the direction of development efforts. This seems to be key to creating
a genuine partnership among community-based, national and
international assistance leadership.

The most significant obstacle identified was social attitudes.
Deeply rooted cultural beliefs, which often stigmatize and de value
disabled children, were faced daily at both the community and family
levels. As rapporteur, Edward Kimuli (Uganda National Institute of
Special Education) described them, five roots of perceptions of low
value of disabled children discussed by the group - (a) lack of
exposure to disabled children, (b) stigma, religion, (d) lack of
information, and (e) cultural beliefs. In one developing country,
disability was frequently blamed on the violation of food taboos
during pregnancy; from another, parents' attitudes towards a disabled
child depended upon the coincidence of the birth with spiritually
significant events. "Remedies" for the disability could involve the
child in an intensive and potentially harmful regimen of folk medicine
and ritual.

The Working Group felt that interventions, whether through public
awareness campaigns or education focus groups, required enormous
sensitivity to these deeply rooted cultural beliefs in order to be
affective in changing local perceptions about disability. They agreed
that attitudes towards children with disabilities were grounded in
specific and complex circumstances of culture. Changing social
attitudes and awareness towards disabled children would, therefore,
call for careful reflection and understanding of the particular
conditions in a given society.

Another obstacle was the lack of motivation on the part of
national Governments to implement the Standard Rules, to take a
leadership role in incorporating disability issues into sectoral
development and to commit resources to support them.

Among the prerequisites for developing strategies to alter social
awareness and attitudes towards children with disabilities was the
need to define: (a) the problem to be addressed, (b) the group or
social level to be targeted, (c) the "message," and (d) the
organizational vehicle by which it could be most economically
delivered. The strategies to increase public awareness of the value of
children with disabilities and to build self-confidence were:

(a) Support popular education through cinema and street theatre;
(b) Increased the visibility of people with disabilities - as
role model, advocates and experts on disability issues;
(c) promote association of children with and without disabilities -
create opportunities for them to work, study and play together;
(d) Encourage cross-disability interaction and joint ventures to
build momentum for advocacy;
(e) Link parents of disabled children with organizations of
disabled people-create alliances;
(f) Make changes in the law.

Each of these strategies, in order to be more effective, required
specifically designed forms of organization and funding. For example,
the success of linking parents with disability groups would depend on
the presence in a nation/community of both strong organizations of
parents and groups of disabled adults. In addition to calling for
leadership training, the group suggested that one strong organization
act as an umbrella to the others, take the lead in initiating a
project, securing funding and bringing parents and disabled people
together.

For this Working Group, changing perceptions of value held
towards children with disabilities required collaboration among
influential social institutions, both at the national and
international levels. It was emphasized that national Governments are
expected to initiate and monitor the effort, as
stated in the Standard Rules on the Equalization of Opportunities for
Persons with Disabilities. This doctrine also described
awareness-raising as a pre condition for equal participation. National
Governments must be centrally involved so that there is timely
response to the great demand for services that inevitably follows a
successful awareness campaign.

In any case, the Working Group concluded that the essential
problem remained - motivating national governments to address the
concerns of disabled children and to incorporate disability issues
into sectoral development. The international community was viewed as
playing an important role by setting positive examples and monitoring
standards. However, economic realities and cultural belief patterns
weighed heavily; and changes in perceptions must be accepted as a slow
process. One international donor commented that many issues were not
manageable from afar, and that some donor Governments suffered from
fear of failure in the arena of social assistance and equity. The
Working Group suggested, therefore, that: (a) awareness-raising
campaigns be conducted at every level - from the national level down,
as well as from the family/local level up; and (b) technical
cooperation between developing nations be started, because similar
conditions would make for more applicable and relevant assistance.

Although non-governmental organizations were often more attuned
with the needs of children with disabilities and their families, they
compete for scarce resources. Funding requirements that encourage
coordinated efforts were suggested as helpful in fostering
partnerships of non-governmental organizations and community-based
organizations, as well as maximizing limited resources. While the
Working Group encouraged cross-disability efforts that they thought
might be more influential and politically successful, it recognized
that real, irreducible differences in needs and perspectives exist
between different groups of disabled people. More information about
one another could only result in more opportunities to explore common
ground and get those issues onto the development agenda. With few
donor representatives participating in these discussions, the Working
Group felt it lacked the expertise to knowledgeably address the topic
of actually getting the issues of children with disabilities and their
families onto the international agenda of development assistance.

First among the next steps to be taken within each country was
the full implementation of the Standard Rules. Both non-governmental
and state agencies should be queried about conditions for disabled
people.

Second, the Working Group agreed to network with one another for
the purpose of sharing information about methodology in programmes for
children with disabilities. Many participants provided referrals about
sources of funding and information resources in other areas of
disability.

Getting access to the Internet was deemed a key aim of those
participants not currently on line, since information of various sorts
is rapidly and freely available. For many, the Internet also held the
potential for continuous networking of expertise and contacts made
during the Workshop.

Finally, the "waiting task," as it was described, remained
figuring out a satisfactory way to combine local control over the
direction of development efforts with assistance from the
international community.

^Return to top.

Working Group V: Protection and rights of children with disabilities

Serving as rapporteur, Charlotte McClain (Community Law Centre)
synthesized the Working Group's underlying concerns into two
goals/themes: (a) bolstering agencies/divisions in their commitment to
compliance of Standard Rules on Equalization of Opportunities for
Persons with Disabilities at the country level, especially in ensuring
inclusive planning and programming, as well as regular review of both;
and (b) in encouraging donors'actions to devote a percentage of
funding to the further realization of real promotion of disability
issues along with human rights, i.e., making this one of the criteria
for development.

To accomplish these goals, the Working Group suggested several
concrete strategies, each with the objective of providing (a) an
information strategy to educate key personnel, and (b) the promotion
of partnership at all levels - community, national, regional and
global. Their framework for action called for a fundamental shift to a
rights perspective, rather than a charity perspective. The steps to
achieve this shift were identified as:

(a) Promote recognition through legislation, planning and information;
(b) Develop or enhance mechanisms for reporting, enforcing,
utilization and timing of programmes for children with
disabilities and their families;
(c) Political and legal action including (i) oversight and
advocacy, (ii) Department of Peacekeeping Operations of the
United Nations Secretariat/non-governmental organizations
support, (iii) international exchange, (iv) accountability and
(v) transparency;
(d) Strengthen and create inclusivity by focusing on parents,
community groups, and the poorest of the poor.

The Rapporteur then described several activities and outcomes
that the Working Group proposed as a means for fostering the paradigm
shift:

(a) Identify and examine country reports for inclusivity on
disability issues;
(b) Organizations review plans for action, documents, data
related to the "rights" focus;
(c) Review of Disability-adjusted life years;
(d) World Bank "indicator"
(e) International disability/rights consultant to identify
resources, organizations and model programmes involved in rights of
children with disabilities, for example, through such regional bodies
as ASEAN, SAARC, OAU and ESCAP;
(f) Workshops, advocacy, media - increased public awareness;
(g) Inclusivity of human rights in all social and economic
development planning;
(h) Baseline for data;
(i) Accountability;
(j) Regional and national capacity-building.

The discussions of the Working Group emphasized the following
five action steps to ensure that the protection and rights of children
with disabilities remain addressed by every sector are integrated into
development thinking:

(a) Promote the recognition of human rights by;
(i) Adopting comprehensive legislation;
(ii) Incorporating human rights into all levels of policy and
planning;
(iii) Providing appropriate and accessible public information and
education;

(b) Develop and enhance international mechanisms for reports,
their enforceability, utilization and timing;

(c) Ensure political and legal action for domestic enforcement
through:
(i) Oversight and advocacy;
(ii) Department of Peacekeeping Operations of the United Nations
Secretariat non-governmental organizations
(iii) International exchanges for capacity-building;
(iv) Accountability and transparency;

(d) Strengthen and create inclusivity within national planning
and advocacy groups (parents of children with disabilities, community
groups, poorest of the poor), resulting in:
(i) Empowering families;
(ii) Providing family support;
(iii) Ensuring quality of access;

(e) Facilitate a paradigm shift from a "charity perspective" to a
"rights perspective" in programming, planning, and delivery of
services.

^Return to top.

Concurrent sessions

Four concurrent sessions, each repeated in its entirety so that
workshop participants could have the opportunity to attend more than
one session, focused on "Family involvement for children with
disabilities", "coordinating education and health programmes", "Public
awareness and information sharing" and "Protection and rights of
children with disabilities".

The concurrent sessions were designed to provide Workshop
participants with exposure to programmes and practices currently
underway in developing countries. They illustrated ways that
Governments, communities, and individuals create opportunities for
children with disabilities and their families through economic and
social development policies and programmes.

^Return to top.

Family involvement for children with disabilities

Suzanne Reier (World Institute on Disabilities) began her
introductions by emphasizing the importance of family involvement.
"The family," she stated, "is the first and most enduring point of
contact for children with disabilities." Ms. Reier then introduced the
first two presenters: Roberto Leal Ocampo (Confederation of Central
American Parent Associations of Children with Disabilities) and Diane
Richler (Canadian Association for Community Living). Ms. Reier
remarked upon the wide variety of experience Mr. Leal has had, ranging
from serving as Nicaraguan Ambassador to several Central American
countries, to being the founder and director of an association of
family and parent organizations. She described Ms. Richler's
involvement with and commitment to inclusive education and living for
people with disabilities. Finally, she indicated that Mr. Leal and Ms.
Richler had prepared their presentation collaboratively, and that Ms.
Richler would speak on behalf of both of them.

Ms. Richler began by stating that she and Mr. Leal had been
working in collaboration for many years, and that she would be talking
about their three-year project, Partnerships in Community Living,
which began in 1993 and ran through 1996. Funded by Canada, the
project was intended to promote social policy and forge alliances to
help families and children with disabilities. The project was
conducted on a hemispheric basis, and drew together representatives
from 36 counties for a seminar at Managua, Nicaragua, in 1993. Each
country sent three representatives: one parent of a child with a
disability; one professional who worked with individuals with
disabilities; and one government representative. Interestingly, many
of these representatives did not know one another, even though they
were from the same country. The project was based on the concept that
families need to be present at all stages of planning and
implementation of social policy. "The role of parents is fundamental,"
said Ms. Richler, "because of their ongoing lifelong commitment to
their sons and daughters. Professionals, no matter how much they care,
come and go, but the parents remain."

The guiding framework of the Managua seminar and of the project
thereafter was a clear endorsement of a human rights perspective on
disability. There had never been a grouping of people like this
before. Was there a common vision for people with disabilities in the
hemisphere? Yes. "Once you stripped away language, economic situations
and differences of culture, the vision was very uniform," Ms. Richler
said. "It was based on the broad concept of human rights." The
five-day seminar culminated in the Declaration of Managua, which was
signed on the last day in the presence of the President of Nicaragua.
Ms. Richler read the opening paragraph of the Declaration, which, she
said, encapsulates the vision that has guided all their work:

"To ensure social well-being for all people, societies have to be
based on justice, equality, equity, inclusion and
interdependence, and to recognize and accept diversity. Societies
must also consider their members, above all, as persons, and
assure their dignity, rights, self-determination, full access to
social resources and the opportunity to contribute to community
life."

She pointed out that nowhere in this Declaration is there mention
of disability. Participants in the seminar believed that it would be
impossible to build an inclusive society if special rights were given
to those with disability. "In order for us to be able to think about
communities where children with disabilities could fully exercise
their rights, communities had to be inclusive of everyone. If we were
looking to build only disability rights, it meant that others would be
excluded. So a human rights perspective was taken."

One of the major findings of project: While individual nations
can do a lot to improve conditions and circumstances for people with
disabilities, their work and social policy can be adversely impacted
by activities of organizations beyond their borders. Example: An
international financial institution decides to emphasize projects
focused upon educating girl children. In funding such activities, the
institution unintentionally creates a system that does not take into
account children with disabilities, and in fact limits their
opportunities by emphasizing opportunities for another.

The project has identified a number of international funding
organizations, and has been encouraging them to use the Declaration of
Managua to determine their actions. The project has also been looking
at the policies of a number of organizations who are interested in
sustainable development. What, Ms. Richler asked, is the development
we want to sustain? "Our objective is to work at sustainable community
development, including those with disabilities." She referred to a
recent statement she had heard that "you can't have peace in the midst
of hunger" and said emphatically, "We can't have peace when there are
significant groups of people who are completely excluded from the
benefits of their communities."

Example: She spoke of disabled veterans in Central America who
had been working toward securing services based upon their disability.
As a result of learning about the Declaration of Managua and the
philosophy behind it, they are now starting to see that categoric
programmes are not helping them to exercise their human rights, nor
are those programmes really helping them to become part of the
community. "We can't have elites among disabilities," Ms. Richler
said, "where some get services and some don't."

Ms. Richler also discussed what she called the rising interest in
civil society. Some international financial institutions have become
interested in civil society; research by Putnam and others claims that
a stable civil society leads to economic development. There is growing
international recognition that as long as there are excluded groups,
there will be social unrest. Social exclusion is one of the roots of
social instability. She admitted that watching the activities of some
international institutions makes her nervous. She fears that they may
be putting the human rights of people with disabilities at risk and
pointed out several actions that can imperil such rights. One is
handing off responsibility to local communities for education or the
provision of social services. While there is the sense that
privatization is better and that communities can "do it more,
cheaply," the end result is that workers lose rights and pay. Yes, it
saves, but privatization is not a good measure for protecting rights,
because then "the rights of people with disabilities can come at the
cost of rights of workers."

Another action that concerned her was promoting philanthropic
activities and institutions in countries that have no tradition of
philanthropy. The problem with this, she said, was: "Who's deciding
what the priorities in social policy should be? Not the people with
disabilities, that's for sure. The people deciding are those with the
funds." Thus, creating a role for philanthropy is yet another way to
give power to the elite. Ms. Richler emphasized that, in determining
policy and activities, institutions and planners need to consult with
people who have disabilities who can offer insights and suggest
solutions that others would never think of. "Participation is not
calling them in at the last minute to look over set plans."

The project has had some success in changing attitudes. The
InterAmerican Development Bank now has asked them to look at the loan
programmes of the bank and of others working in the region:

(a) To see how to include elements in their programmes that would
promote the labour and social participation of people with
disabilities,

(b) To identify who the actors are that could play a role;

(c) To develop a plan of action for each country and region that
would allow the projects to move forward.

In essence, they will be looking at how organizations like the
InterAmerican Development Bank (IDB) create policies that, in turn,
create circumstances that are disabling to participation of people
with disabilities. So that, while she is gratified that IDB recognizes
their work as important, she says that "the pressure is on to come up
with good recommendations that will lead somewhere." She hopes that
their model can be applied beyond Central America as well.

Q: Who should we see as responsible for getting information about
the project out at the country level?
A: Ms. Richler responded that this question identifies "the nub of
the challenge." While the project had funding for three years and
pursued its goals with enthusiasm, it is always difficult to get
funds for follow-up. This is particularly true when working in
areas and with organizations that can not be reached because they
do not have a phone or a fax machine. They had tried to repeat
the experience of Managua at the country level and had varying
degree of success. Panama had recreated its own seminar,
patterned after Managua, but others had done nothing.

Next, Ms. Reier introduced the second presenter, Dr.Ghassan
Rubeiz, (Christian Children's Fund), who is working in Central and
Eastern Europe and with the Newly Independent States (NIS). She
remarked upon his rich experience working in different regions,
including the Middle East. Dr. Rubeiz divided his presentation into
two parts. In the first part, he introduced the family model of
sponsorship which the Christian Children's Fund uses, and which, he
said, is applicable to all forms of children in need. In the second
part, he presented three models of individual projects in Eastern
Europe, where the family factor is strong.

Dr. Rubeiz described the Christian Children's Fund (CCF) as an
international, non-profit, non-sectarian agency working for children
in 32 countries, including the United States. The Fund operates
through a child sponsorship model, where an adult "who is distant but
caring" sponsors a child. The average sponsorship lasts seven years.
Benefits are always in the form of community projects focused on a
large group of children. Typically, 500 families might be involved. As
the project matures, the radius of service widens and reaches more and
more families. Projects typically last 10 to 15 years, allowing time
to make a real change in the life of the community. CCF's presence,
then, is lasting. New projects pick up when old ones leaves off.

Under the sponsorship model:

(a) The whole family is served. A child is sponsored, but others
receive help as well;
(b) Parents are in command of the project;
(c) The child's needs are assessed in light of the family's
situation;
(d) Parents learn to shift from a passive to an active role. They
serve on project committees and boards;
(e) Parents can make or break a project. They hire and fire
staff, introduce policy, serve on health committees and other group
structures;
(f) There are few staff (3-5) and many parent volunteers (50);
(g) Parents serve as advocates for the project within the
community. They articulate common concerns about children's issues,
and carry on functions that attract the media.

Dr. Rubeiz stated that parents' credibility is crucial in
changing attitudes and policies.

An infant-mother cerebral palsy Project: This project was
established in Latvia (where it has since ended) and in Lithuania
(where it is still ongoing). The project has the following components
and activities:

(a) The child and mother stay in a residential setting (what he
called a sanatorium) for a 4 week programme;

(b) Parents are trained to work with their child during this
period;

(c) Staff are trained so that they understand the needs of the
parents and of the child;

(d) Training material is developed and given to parents to take home;

(e) Local community training takes place, including orienting the
medical personnel in the community to show how to support the needs of
the child and family;

(f) The project is put in touch with international resources that
can provide further training, information, and assistance;

(g) The parents and child can return to the hospital when needed;

(h) CCF provides funds and resources for adaptive equipment.

Major results:

(a) Attitudes change toward the child;
(b) The Child's behaviour changes;
(c) Staff concerns shift toward accepting parents as a major
element in the child's life, seeing them as experts on the child;
(d) Communities now have adaptive equipment that they are
replicating from local materials and using.

Although the project in Albania was not actually called the
hidden child projects, Dr. Rubeiz refers to the project as such,
because the name captures the essence of the situation that children
with disabilities face in Albania. Most children with disabilities are
kept hidden at home. The project (which is being implemented by CCF in
partnership with a local non-governmental organization. The
Independent Albanian Forum of Women a local non-governmental
organization focused on creating a system of community-based services
for the children. Initially, they attempted to train parents together,
but this was very difficult because parents were not used to an
academic approach. So they have moved to a model where one parent is
trained to help another, which is more successful. Staff also have
organized community-based social activities, which brings mothers and
children together outside the home. These are very successful; mothers
and children now have a reason to leave the home. The project also has
established a referral system and provided material support, such as
seeing that children get the aids they need (e.g., hearing aid,
prosthesis).

Institutional child project in Estonia: in Estonia, thousands of
children (both with and without disabilities) are put in institutions.
The purpose of this demonstration project was to move the children out
of the institutions and offer them support through community-based
services. The project was implemented in both an urban and a urban
setting by one local non-governmental organization. The disabilities
of the children varied. Social policy in Estonia is a major obstacle
to basing services within the community. Although it costs three times
more to put a child in an institution than to serve the child within
his or her community, directors of the institutions do not want to
return children to their homes. As directors, they receive money for
the institution caring for the children; they also don't want to lose
their jobs by making the institutions unnecessary. In this sense, Dr.
Rubeiz stated, the children are victims of social policy. The
Government of Estonia has taken over the project, and is very
impressed with its results. They have started taking a prevention
approach as well, looking at the child before he or she is placed in
the institution and trying to prevent institutionalization.

Q: Is CCF doing anything with adolescents? Everything seems to focus
upon the young child, and the adolescents seem to fall through
cracks.

A Dr. Rubeiz answered that the projects he had described typically
dealt with children up to age of 16. But CCF, in collaboration
with another organization, has looked at issues associated with
youth in conflict with the law. They have a kit called Children
First!, which is designed to foster capacity-building for non-
governmental organisations in five areas, including in the areas
of human rights, education, nutrition and health.

^Return to top.

Coordinating education and health programmes

Maxine Freund (George Washington University), defined the goal of
this concurrent session as to understand the complexities of the
services in health, education and welfare. Dr. Freund introduced the
first presenter, Veronica Mpagi, (Ministry of Education of Uganda),
who would discuss Uganda's efforts to collaborate with health
professionals and parents in supporting children with disabilities.

Mrs. Mpagi began by describing how in April 1992, the Government
of Uganda agreed with recommendations to democratize education by
making it available to all children including those with disabilities.
Meanwhile the 1987 health policy review commission report recommended
as its main goal health for all by the year 2000. Intersectoral
coordination was recommended for all government organizations to
ensure achieving this goal. A statutory health advisory council was
instituted to advise the Ministry of Health on policies to be
followed, especially on necessary health activities and intervention
towards those with disabilities. It was not until March 1996, however,
that the Ministry of Health had spelled out specific commitment
towards disability services. Nevertheless, along with the Ministry of
Education, it had created the first integrated action programme
through an Inter-ministerial health education expert panel. Along with
other relevant ministries, such as that of agriculture, and with the
support of UNICEF, they had guided the development of the current
basic science and health syllabus for primary schools in Uganda during
the 1980s.

In July 1992, with DANIDA support, a national special education
programme - Educational and Assessment Resource Services (EARS) - was
started. Centres were quickly established in the 39 districts of
Uganda by the end of 1996. The main task has been seeing to the
consolidation of programme activities in every district. Every effort
was made to plan supportive strategies to services development, as
well as to coordinate with other disability service givers. Earlier in
1992, the Ministry of Gender and Community Development established the
Community Based Rehabilitation (CBR) Programme, which was given the
leadership role in coordinating disability services. EARS helped
coordinate disability services and called upon the orthopedic and
child care departments at the national hospital at Mulago to try to
meet the demand for more services and to conduct national
sensitization seminars and training about disabilities. Both are now
slowly decentralizing some of their services to regional centres where
the real action towards disability services takes place. The three
ministries hold periodic joint planning meetings and focus attention
at the decentralized level of the regional centres.

One outcome of this effort has been the Disability Rehabilitation
Section of the Ministry of Health, started in March 1996 with Danish
financial support. Commonly referred to as the "disability desk," this
unit has an intersectoral subcommittee called - the Technical Advisory
Committee (TAC). TAC is composed of top local managers of the
disability programmes in each of the ministries:

(a) EARS/Special Education in the Ministry of Education;
(b) CBR in the Ministry of Gender and Community Development;
(c) Disability rehabilitation section in the Ministry of Health and
a representative from NUDIPU, the National Union of Disabled People in
Uganda, an umbrella organization for smaller disability organizations.

TAC handles all inter-ministerial questions and needs that are
identified among the three ministries and are then channelled for
appropriate action. TAC is also reinforced by various task forces on
individual disabilities, combining relevant personnel of the partner
ministries. At the district, county and sub-county levels, where the
individual sectoral activities exist, collaborative action is carried
out among the three ministries, mainly in the areas of sensitization,
identification, assessment and referral. The CBR programme, however,
is only in seven districts at the present time, but more are planned
for 1997.

Special education programme personnel reach practically all
segments of society - politicians, administrators, church organizers,
the general public and caretakers for children whose disabilities are
so severe that they have to be home-based. They design training
exercises for parents to carry out with their own children with
disabilities, to minimize development of secondary disabilities, and
advise them about self-help development. Special education personnel
also counsel parents, caretakers, and siblings, as necessary and when
feasible. The same personnel work on schools' integration of children
with disabilities, sensitizing school communities to:

(a) Change the very negative attitudes towards education of
children with disabilities;
(b) Give simple training to classroom teachers;
(c) Monitoring students' progress.

Where the CBR programme is under-way, a lot more difference is
made. Even at the sub-county level, there are personnel to reach the
grass-roots society and individual families more often than the
education personnel. Referrals between Ministry of Education and the
CBR programme are very common. Despite the limited number of
personnel, the structure exists. But unfortunately, since this idea is
still fairly new, referrals are not always honoured.

In districts where the three sectors are fully operational, more
collaboration is happening for other districts. EARS began with one
district in 1995 and expanded to three more by December 1996. The
going is promising. EARS personnel work very hard with families to
dispel the negative attitudes that exist toward people with
disabilities in Uganda - "where the silent practice has been survival
of the fittest." Also, an unfortunate development had resulted from
earlier donor agencies who had created boarding schools, keeping
children away from their families as a result of giving the children
food stuffs, clothing, sugar, blankets etc. Most parents then only
expected to gain by the child with a disability, and expected someone
else to care for them. Now parents are learning to value the child
with a disability. They struggle to pay school fees and provide most
other needs for these children. This means that parents work hard on
making other parents adopt attitudes of acceptance.

Two recent national government moves have boosted disability services:

(a) The 1996 New Constitution provided for representation of
people with disabilities on councils up to the Parliament level.
Directly elected by the people, these five representatives now include
one deaf person, two blind people, and two physically disabled people.
Unfortunately, there are no representatives of people with mental
disabilities;
(b) Decision to give free education to four primary school
children in every family, first consideration is being given to
children with a disability.

In summation, Dr. Freund commented that the Uganda experiences
reflect the inter-agency coordination efforts that we hope to cover
further in the afternoon break-out groups. She then introduced the
second presenter, Ajun B. Bista (Ministry of Education of Nepal). Mr.
Bista began by mentioning a few important facts about Nepal:

(a) The Government was a signatory of the Educations For All
proclamation in 1990;
(b) The Government had implemented primary education programmes
by 1992 in 40 out of 70 districts for ages 5 to 16;
(c) Located between India and China, 85 per cent of Nepal is
mountainous terrain, with some areas totally inaccessible;
(d) The l991 census estimated a population of 18 million people;
the population now stands at 20 million population or a 2.1 per cent
growth rate;
(e) 12 per cent of Nepalese are disabled.

Mr. Bista explained that the basic primary education focuses on
quality and access. Its principal funders are the World Bank, UNICEF,
DANIDA, UNDP, the government of Nepal, and the Governments of Japan
and the United Kingdom. The Special Education Programme started in
1964 with the opening of two special education schools: one for blind,
one for deaf students. Now, 20 schools have been established for
mentally retarded students and four for disabled population. Some 25
of 75 districts have special education programmes funded by the
Government of Denmark. Only one school is inclusive. Education for all
means:

(a) General awareness: local community acceptance and
recognition; need for development of inclusive schools; adaptations in
curriculum;
(b) Training of teachers: preparation of teachers includes
awareness course; basic training, which is four weeks teaches about
multi-disability approach; assessments and screening, educational
planning, materials development; professional interaction;
(c) Changes to physical environment: includes spacious classrooms;
appropriate lighting; good outdoor environment.

Mr. Bista said, "It is our hope that no child is cut off; all are
included . . . All children have the right to quality education; all
should be included in a classroom closest to home."

He reported that to date, 22,000 primary schools have been
established in Nepal, even in the remote parts of the country. He
cited education models used throughout the country, which include:

(a) Team teaching;
(b) Multi-disability approach;
(c) Support to teachers;
(d) Aides and classroom volunteers;
(e) Itinerant specialists;
(f) Flexibility in curriculum;
(g) Mobile teaching team;
(h) Child-to-child approach.

Since the country is very mountainous and there are no basic road
facilities, it is very difficult to use wheelchairs, so parents often
need to carry such children. The Government of Nepal has promised to
provide access, but it is slow in being realized. Even though we have
residential facilities and segregated schools, we are moving towards
integrated settings. But there are, however, distinct barriers to full
integration of children with disabilities: (a) terrain; ( b) lack of
teacher training; (c) social attitudes and behaviours; assumption is
that "disabled children do not contribute;" and (d) lack of early
intervention. Some attitudes are changing. Parents used to hide their
disabled children at home; now they bring such children to the local
school for diagnosis and programme support. Coordinated with health
ministries, the Ministry of Education is attempting to present an
integrated approach. Together they are trying to make local and
international linkages with universities and organizations in
neighbouring countries.

Q: Aurora L. Estrella (Partners in Policy of the Philippines),
asked, "Do you have statistics on the number of children with
disabilities served before the programme started and the number
of children now being served?"

A: Mr. Bista responded, "We did a survey (it's ongoing) in 20 out of
75 schools. This survey pinpointed the type and the degree of
disability, so it helps in allocating resources to correct
schools."

Mr. Bista continued by emphasizing the need to establish an
infrastructure for children with disabilities in his country. He

pointed out that 14 per cent of government funding goes to education,
despite its promise to move it up to 16 per cent. Fifty-five percent
of this budget then goes to basic and private education. With 22,000
schools, resources are stretched. He concluded by saying that the
Ministry of Education plans to coordinate with the Health Ministry
this year to test an integrated approach for services and programmes.
Dr. Freund underscored that Nepal's emerging model is challenged by
the intense terrain issue.

Finally, Dr. Freund introduced Sue Stubb (Save the Children of
the United Kingdom/ Save the Children Fund's Alliance, a partnership
with Norway/ International Consortium on Disabilities). Ms. Stubbs
began with a brief history of Save the Children and then presented an
Integrated Services Model that grew out of SAVE's experiences in the
mid-1980s in East Africa. There, WHO began with a community-based
rehabilitation (CBR) model that delivered therapy training services in
homes where they expected people to perform such therapies. "They soon
realized," Ms. Stubbs commented, "that this institution-based (home)
service delivery model was isolating, only benefited the individual
child in the household, and had no impact on the community or
schools." Now, CBR models in southern Africa region have taken a
broader community approach - they have gone into the community,
listened to mothers, and heard two needs to be addressed: poverty and
isolation, not rehabilitation.

As a result of these experience, SAVE decided to address poverty
by (a) empowering families in developing self-help groups, and (b)
giving grants, loans activities to promote self-esteem. SAVE addressed
the issue of isolation at all levels, such as attitudes changes and
building up self-help groups so that rehabilitation could be carried
through. The programmes targeted community barriers and spent years on
community awareness and education by promoting self-help groups. One
problem of CBR programmes was that it undermined natural community
support. Prior to CBR coming into a home, a neighbour was coming over
to help the mother with the disabled child. Once CBR personnel came to
help, the neighbour stopped coming. The notion of such community
support is lost on Western countries, where Western parents of
children with disabilities hold their own child back in classes and
"the child with a disability is viewed as taking too much of the
teacher's time." Ms. Stubbs described Desuto parents as believing that
the child with a disability ". . . teaches all children social
responsibility and community responsibility . . . We are trying to
shift this [issue] to natural supports."

In the new model, organizations and disabled advocates work
together to teach parents to see their child with a disability as a
valuable contributing member of the community. Through inclusive
education, CBR attempts to make partnerships with disabled activists
work for parent advocacy legislation and policy changes, as well as to
fulfill the goal of "unlocking community potential." One of the tools
to accomplish this is to have people with disabilities to work with
other people with disabilities. Example: An adult person with Downs
syndrome assisted a blind person in daily living skills. By building
the capacity of children, the key role of using a self-help approach
is to focus attention on unlocking potential, to target the barriers
of inclusion, and to create "solidarity around disabled children."
Example: A child with a disability uses a wheelchair, but there are no
roads. Since he kept falling out of his chair, the community rebuilt
the road to school, reflecting solidarity around the child as welfare.

In general, special education was a system based on the belief
that there should be an absolute division from basic education
programming. Integrated education was based on the rehabilitative
model and seemed to require that you "fit the child to the school," or
mould the child to fit the programme. Inclusive education, however, is
based on the belief that the child is disabled by the barriers within
the community. The premise now is to accept reality - that all
children are different and that each should be valued for the
contribution s/he makes to the community. Example: In China, they
thought it would be more expensive to build segregated schools for
disabled, so they included children starting in kindergarten and
realized that this was the best way. Since special needs start in
kindergarten, all curriculum is "child focused," utilizing team
teaching and cluster schools.

Integrated education became the catalyst for changing the system
and removing the barriers. Differences are a reality. "We must learn
lessons from economically poorer countries that education takes place
in a wide range of settings, and that each country/community should be
able to support even the severely disabled, even in the home if the
mother needs support there. That is inclusion: inclusion in the
overall community." Ms. Stubbs asserted that inclusive schools are
flexible; child - centred - they teach all pupils; and encouraged
teachers with disabilities to become involved. "The lesson is that
education is something that happens in all levels of the community . .
. education is broader than the school setting. It can happen in the
home and the community as well." Example: In Mozambique, deaf adults
are working in neighbourhoods with deaf children. Ms. Stubbs concluded
her remarks by making the following summary statement: "Inclusive
development is the aim: valuing differences; providing access for all
children; combatting discrimination; promoting a children's agenda and
adult literacy; and integrating health and education services."

^Return to top.

Public awareness and information sharing

Christine Fowles (African Development Foundation) emphasized the
importance of positive community and societal attitudes regarding
childhood disability to making children with disabilities welcomed
members of their schools and communities. She introduced the first
presenter, Suzanne Ripley, (Academy for Educational Development), who
has a bachelor's degree in English and education, a masters degree in
mass communication, and is working on a doctorate in social service.
Ms. Ripley has worked at the Academy's National Information Centre for
Children and Youth with Disabilities since 1984, a few short years
after the Centre began;

"Today I'm going to tell you about how the Centre, but as I tell
you about where we are now, don't forget that this is only after 20
years. Hopefully, it won't take any of you 20 years to get to where we
are today. By working together we can work faster, share information,
and avoid the things that we at the Centre found out - through
experience - don't work.

"I started in the information business about 20 years ago with a
bunch of mothers sitting around in a kitchen with a box of index
cards. We knew we needed more information to answer questions we had,
so we got together and collected information. We wrote down the
information on organizations we found out about on our index cards and
kept them in boxes. I have a personal interest in disabilities. Both
my sons were born with a rare genetic disorder that gives them a
number of disabilities, including mental retardation, and my older son
has cerebral palsy and is legally blind. (Ms. Ripley circulated
pictures of her sons Alex, 21, and Joe, 19.)

"In 1975, the Government of the United States passed a law in
which children with disabilities were guaranteed a free and
appropriate education. In 1990, this law was revised as the
Individuals with Disabilities Education Act. These laws, dealing with
the education of children with disabilities, mandated that an
information centre was to be set up to respond to questions from the
public about the education of children with disabilities. That's how
the Centre was started.

"The mandate of the Centre is simple: to respond to requests from
the public about children with disabilities. Anyone can contact the
Centre for information: teachers, parents, bus drivers, architects,
policy makers, journalists, administrators etc. Information is what
people need to reduce or resolve a problem. They need information so
that they can make decisions. And the information must be accurate,
current, and most importantly, relevant. In order to make sure that an
information centre is providing relevant information, they have to
understand the nature of the audience's problems. They need to talk to
their audience.

"The Centre talks to parents, researchers, educators, policy
makers, students, children, medical people and others. We find out
where information sources are. Then we link those with answers to
those who need information. People don't contact information centres
with questions - they contact us with problems. They call us and
describe a situation. But they don't necessarily know what to ask, and
whom to ask. Example #1: A mother calls the Centre and says, " I've
just found out that my newborn daughter has Downs syndrome. I don't
know exactly what that means. The doctor says she may need heart
surgery and may have to be in the hospital for quite some time. I
don't have the money for that. And I have two other young children at
home that I need to care for."

"What was this mother's question? Our information specialists
listen to situations like this and identify what people need. In this
case we would send the mother a fact sheet on Downs syndrome, a state
sheet for her state - this lists all state - level resources, as well
as parent groups. We'd send her a parent guide on accessing programmes
for infants, toddlers, and preschoolers. We'd also link her to
organizations that could provide respite care.

"We take people's problems and provide them with information, the
questions they need to ask, and which people they need to ask which
question. Over the years, certain situations have become familiar.
Therefore, we've developed publications to address those familiar
problems.

"Example #2: A teacher calls and says one of her students isn't
coming along very well. He seems to be having problems learning and
isn't keeping up in class. We would send this teacher publications on
assessing children for the presence of a disability, and
bibliographies on assessing children for disabilities for the school,
and perhaps, the version for parents, so that she could give it to the
parents of the child.

"In order to be most effective we need staff who know the issues.
Our staff is made up of: (a) parents of kids with disabilities; (b)
professionals: those schooled in special education/disabilities, and
some former educators; and (c) people with disabilities. We also have a
resource network or organizations that we link people to - national,
state and local - level organizations.

"An information centre can only be useful if people know it's
there. Therefore, we do lots of outreach. How? By:

(a) Mailings to those on our mailing list;
(b) Placing ads/announcements in journals and newsletters;
(c) Distributing brochures and publications catalogues at conferences;
(d) Sending our publications to organizations;
(e) Public service announcements on television;
(f) Providing information over the Internet with our Web and
gopher sites (the Centre can also be reached through e-mail)

"In order to keep tabs on how effective we are we do evaluations.
We keep records about who contacts us. So we know what issues people
are most interested in, and we also see who we are reaching.

"Parents and professionals need information, but they also really
need to know that they are not alone. They need to know that other
people have and are going through the same things they are. They need
to connect to a community that can give them support. In order for
people to make a decision they need to know all their options. We
don't have all the answers. But, we understand the questions, and if
we don't have the answer we know who to refer people to. We give
people hope, but most of all we hope to give them direction.

Some statistics on the Centre from 1996:

(a) Some 42,000 people were served this past year: 50 per cent
parents, 50 per cent professionals, a total of 48,000 inquiries;
(b) We've heard from every state and territory in the United
States, and now with our site on the Internet, we're beginning to
hear from international locations;
(c) Over 50 publications to answer your questions;
(d) Over 1,000 organizations in our database.

"But please remember, this is after 20 years. When we started, we
didn't have anything. We didn't have any databases, we didn't have a
Web site. We didn't even have any computers. The only thing we had
were phones and lots of paper. Phones that we could only call out on.
No one could call us. We talked to everyone we could at every
conference and meeting. We collected all the free material we could
from other organizations. Then we built on that. We answered requests
through the mail only. Our supplies were donated. People gave us the
desks, chairs and eventually computers that they didn't want or need
anymore. The first staff we had were half paid, half volunteer. Now we
can help other fledgling organizations start up. We can give them
materials to start with. You don't need much money to start. Once you
show people how valuable a service you are providing and how much you
are doing, you will gain support."

Ms. Fowles then introduced the second presentation, which focused
on grass-roots public awareness campaigns to spread positive
information about children and adults with disabilities in Mali and
Uganda. Mr. Souleymane Diallo (Mali Association for Prevention of
Mental Deficiencies in Children (AMALDEME) has served as the Director
of Education at AMALDEME and in 1996 has also been the director of
Mali's Special Olympics. He collaborates on various levels with other
non-governmental organizations and is the Chairman of the board of
organizations who work in Action on Disability and Development (ADD);
his statement to the Workshop is set out below.

"I would first like to thank the African Development Foundation
for sponsoring me to participate in this Workshop. I would also give
thanks to all the organizations who organized this Workshop,
especially AED, DANIDA, and UNICEF. My talk will be about changing
attitudes toward disabled people in developing countries.

"AMALDEME was founded by a mother of two daughters who are
mentally disabled. She founded AMALDEME in l984, but activities
weren't really started until 1987. In order to reach AMALDEME's goals,
she created a centre that is the core of all activities. AMALDEME has
several goals:

(a) To study mental deficiencies and diseases associated with it;
(b) To work with expectant mothers to better prenatal care;
(c) To work with children with disabilities to help them find jobs
- to train them.

"There are several divisions of AMALDEME:

(a) A therapy division;
(b) An education division that deals with both the education of
children with disabilities who can be mainstreamed and those with
severe disabilities who cannot be mainstreamed;
(c) A division for extracurricular activities, including sports;
(d) A vocational education (training of skills, helping people do
better at what they are already doing;
(e) A community-based division.

"How are disabilities viewed in Mali? In Africa, people say that
nothing happens by chance. If a child is born with a disability, it
may be viewed as a punishment for the family. It depends upon the
circumstances during which the child is born. If the child is born at
a time when positive things are happening, then the child is viewed as
a good omen. If the child is born at a time when negative things are
happening, then the child is viewed as a bad omen - as a punishment
for the family. If neither good or bad things are happening, then the
child is considered to be afflicted with a disease. If this third
scenario happens, then the parents want the child cured instantly.
They take the child from witch doctor to witch doctor trying to cure
the child. In such cases, the child often becomes worse due to these
attempted healings; and by the time they reach the AMALDEME centre,
they are more disabled than when they were born.

"AMALDEME is trying to educate the people and change attitudes.
We are trying to get more children with disabilities mainstreamed so
they are not left on the sidelines. How do we change attitudes?
Several ways, such as:

(a) We have started an early intervention centre. We are
developing different types of intervention, such as play therapy. The
idea is to make parents interact with other parents so that they learn
from each other and learn what children can and cannot do. We use play
to help evaluate children. Then we follow up these evaluations by
visiting them at home;

(b) Outreach: AMALDEME has made a video tape about a family with
an autistic child. The video dealt with prejudice against mental
disabilities. It follows the family's life up until they go to the
AMALDEME clinic. Efforts like this make the community more aware of
problems;

(c) One of AMALDEME's goals is to make people aware of disabled
children's potential. In order to do so, AMALDEME has started
activities that make money. These money-making activities enable kids
to get in touch with and be involved in the community, breaking down
preconceptions of disabled kids. Money-making activities include: (I)
a woodworking centre where kids produce wooden products, including
toys; (ii) a renting service which rents chairs and tables for
parties; (iii) a milling project; (iv) a water-selling service; and
(v) an agreement from the Government of Mali to buy goods from the
centre.

"The barriers that exist for children with disabilities are
slowly coming down. The Government is being supportive, and has even
made October "Mental Disabilities Month." The Government is helping to
demystify children with disabilities. AMALDEME is also trying to
strengthen the community. It is organizing mothers of kids with
disabilities so that they support each other and gather resources to
help their children. They are educating these mothers about their
children's special needs. AMALDEME has a team of people with many
skills: rehabilitation therapists, physical therapists, speech
therapists and others."

Finally, Ms. Fowles introduced the third presenter, Ms. Maria
Kangere, (Community-Based Rehabi1itation Alliance (COMBRA) of Uganda)
to describe grass-roots awareness activities under way in Uganda. Ms.
Kangere is a trained physio-therapist and community-based
rehabilitation trainer. She is a co-founder which started in 1990.
COMBRA is an organization that trains grass-roots trainers. Maria has
a special place in her heart for children with disabilities,
especially those with cerebral palsy; her statement is set out below..

"Good morning. I bring you greetings from Uganda! I have always
had an interest in children with handicaps. My older brother had a
mental illness. At that time, you were never allowed to talk about it,
not even in a whisper. It was a very stigmatizing condition for the
whole family. The only time we were free of it was after my brother
died, because in my culture no one speaks of the dead.

"COMBRA's mission is to improve the lives of people with
disabilities. Our emphasis is to change negative attitudes in society.
COMBRA runs 16 - week courses to train people who will work with
families with kids with disabilities. The main components of what we
do are:

(a) Training;
(b) Appropriate technology - since resources are scare we teach
our trainers how to be creative and create assistive devices with
materials at hand;
(c) Information dissemination: we have a small information centre
with a library that people can use, and we are producing
newsletters and leaflets;
(d) Income generation: we run a small clinic in town to help
finance our efforts.

"Experiences of the community programme: we work with very poor
communities. It is very hard to penetrate communities and to gain
trust. People live in shanties. There is garbage all over. The area is
very swampy, and the living conditions very poor. Because the water
table is very high and the ground swampy it is a perfect breeding
ground for mosquitos. Malaria is rampant. Many children are born
healthy but get malaria by the age of five, and from the malaria fever
become mentally retarded.

"We try to talk to people and identify and solve problems. COMBRA
tries to work with families to create support groups. We also try to
get the children with disabilities integrated into the schools. This
is very hard because the classes are very large - 150 kids in each
class. The normal children have a hard time keeping up and getting the
attention they need, so the kids with disabilities have an even harder
time.

"The attitude in Uganda toward people with disabilities differs
in every community but is generally negative. Children with
disabilities are viewed as a punishment, many times toward the mother.
It is assumed that the mother may have broken a taboo during her
pregnancy, such as eating eggs. Communities have such strong beliefs
in their myths that it is very challenging to change their attitudes.
Families break down when a child has a disability. Many times, the
mothers are left to raise the child themselves.

"In order to change these negative attitudes, COMBRA has used
different techniques to educate the public about people with
disabilities, such as:

(a) We have people with disabilities who have achieved success
come and speak to the people so they can see how much people with
disabilities are capable of;
(b) We do community awareness through local councils. We teach
the community leaders - chiefs, teachers and church leaders -
sensitivity, and teach them the scientific causes of disabilities.
Then these leaders can influence people within their communities;
(c) We also educate the parents by taking them on field trips to
visit other families with disabilities. They see the programmes that
others have in place, and are then inspired to replicate these
programmes back in their own communities. Mothers are getting together
to support each other and bring about solutions.

"Helping people with disabilities is on the bottom of the
priority list for many of these very poor communities. They are most
concerned about getting enough food and water to live on. To help
mothers, COMBRA has started a programme that gives them an industry
they can do at home, so that they can stay with their disabled child
but still make an income.

"We have had success at changing the attitudinal barriers in
Uganda. People with disabilities used to feel lonely, inferior and
guilty for having a disability. But now, communities are more educated
on the causes and preventions of disabilities, and neighbours are
starting to help families with children with disabilities. Now that
they know some of the causes of disabilities, communities are starting
to work to prevent them. The people are more educated about
disabilities, and in a way this is a problem because now they are
demanding services and there are not enough resources to meet these
demands. It is especially hard to meet the needs of children with
severe disabilities.

"At the national level in Uganda: Uganda has gone through many
civil wars. After surviving all those hardships, people are starting
to demand a better way of life. The disabled people of Uganda are
putting pressure on the Government. They made sure that disabled
people rights were written into the constitution of Uganda. The Uganda
Constitution is available in braille so that blind people can know and
fight for their rights. (The Uganda Constitution was written in 1995
and a person with disabilities was involved). Now there are
representatives on disability issues from different parts of the
country.

"COMBRA has also worked with the media to stop using bad language
in regards to people with disabilities. COMBRA has recently held a
sensitivity seminar for journalists so that they are more aware of the
proper language to use. At present, the disability organizations of
Uganda are focused on adults, not kids. However, the Government is
starting programmes for disabled kids. We have not totally succeeded,
but we are getting there."

Questions for Ms. Kangere:

Q. How do you approach the different tribes with your disability
awareness campaign?

A. There are many different languages spoken by all the different
tribes. However, there are four major languages in Uganda. We use
those languages. We use radio and other methods to reach them. We
don't interfere in their cultural rituals. We have community
leaders talk to them.

Q. Do you have a way to feed information to the government policy
makers? Do you have a dialogue with them?

A. We work at the grass-roots level. There is a national council on
disabilities that reaches the national level.

Q. How do you remove negative attitudes?

A. Slowly. We can't remove them entirely. But it is gradually
getting better. Now we have a deaf person in our Parliament. We
train parents that having a child with a disability is okay. We
take them to visit another family with a disabled child. It goes
very slowly. Not everyone changes.

Question for Ms. Ripley:

Q. As you get involved internationally more and more, how does that
work out with your funding? How are you expanding your
capabilities?

A. The Centre is only funded to work in the United States. Our
Internet site reaches people internationally. We are talking to
groups who are planning to work internationally. That's one of
the reasons we're here today. We can help international groups,
and through them help people internationally.

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Protection and rights of children with disabilities

Ms. Zuweina Khamis (Association of the Disabled of Zanzibar/
Eastern Africa Federation of the Disabled) introduced the session. She
spoke briefly, noting that "children's rights are human rights. Maybe
that's easy to say, but children's rights in the developing world are
not always well planned." Ms. Khamis then introduced the two
presentations.

Charlotte V. McClain, (University of the Western Cape (South
Africa)) began by defining some of the activities of the University's
Community Law Centre. She stated that there is a gender unit, a
democracy unit and a unit on children's rights, of which she is a
part. Her unit focuses on children's rights generally, and her
specific area of interest are children in especially difficult
circumstances. Children classified in this group include street
children, child prostitutes and children who have entered the juvenile
justice system.

Ms. McClain stated that the most striking component in her work
was that disability was so prevalent in each of these vulnerable
groups, and no one was working with them. She observed that the
correlation has not been made between the conditions in which these
children live and the rate and occurrence of disability among them.

In addition to her work at the Centre, Ms. McClain was recently
tapped by the office of the Deputy President of South Africa to work
on policy recommendations for handling comprehensive legislation
regarding disability issues, also known as the "White Paper." In her
work on this policy piece, Ms. McClain concluded that South African
society has "contextualized disability in the area of social
exclusion." This has been demonstrated in the inequality experienced
by vulnerable groups in South Africa: children ("girls are doubly
disadvantaged"), women, the elderly, the disabled and people living in
rural areas. The issues surrounding these groups are intertwined: for
example, children's rights are closely linked with women's rights,
since women are often the caretakers of children and people with
disabilities.

Children with disabilities have been excluded from education and
its benefits, and are likely to become dependent on the Government.
People with disabilities were extremely marginalized during apartheid,
"really doubly discriminated." The new South African Constitution
places a high emphasis on personal dignity, prohibiting discrimination
on the basis of race, colour, gender or disability. However, current
legislation takes a piecemeal approach to addressing disability.

The White Paper, expected to be adopted by Parliament early in
1997, insists that disability issues are human rights and development
issues, and should be considered accordingly. In addition, the policy
recommends that disability issues, such as education and
transportation, should be handled by the appropriate ministry rather
than relegated to the Welfare Ministry. Ms. McClain insisted that
disability must be a consideration in all of the activities of the
Government: "the twining of welfare rights and human rights." This
would enable the Government to plan in a coherent and comprehensive
manner for all its citizens. The aim is to craft and implement a
comprehensive piece of legislation similar to the Americans for
Disabilities Act.

However, as Ms. McClain pointed out, legislation is one thing,
actual implementation is another. Making information available to the
people that need it is critical. People with disabilities may have
rights on paper, but "it makes no sense to have rights if people don't
know they have them." The Centre is working to translate several large
pieces of legislation (including policy on schools, criminal
procedures and the health care act) into common language (parlance)
and into the 11 languages recognized by the constitution. This
information would be available in a variety of formats as well.

Ms. McClain stated that another challenge to implementation is
geography. South Africa has a very rural population. In March 1997,
offices will be opening up in each of the provinces to accommodate
information needs and services since provincial offices are accessed
more readily than national. Ms. McClain noted that they are just
trying to reach people: "Our struggle is still a very basic struggle:
the struggle to provide services. South Africa still has a dual system
- before it was white and black, now it is urban and rural. These are
the things we have to keep in mind when developing legislation." She
concluded by stating that she would like to hear what other countries
are doing to reach their rural populations.

Q: How can you apply international instruments and legislation?

A: Ms. McClain replied that Section 19 of the South African
Constitution allows for the application of international law
principles where domestic law is lacking. Therefore,
international laws, including the Convention on the Rights of the
Child and the Standard Rules, may be invoked when necessary,
though she noted that there are not many lawyers or judges
trained in the field of intemational law.

Dr. Gare' Fabila de Zaldo (Mexican Confederation on Behalf of
People with Mental Disabilities/ Panel of Experts on Disability for
the Standard Rules) stated that it is very important to hear what is
happening in developing countries: "We need to see what is happening
and get together as an international force to push our Governments to
act. It is easy for them to forget. But for us, it is different."

Ms.Penny Platt (University of Manchester) noted that an effective
way of reaching rural populations is to work through local councils,
finding out when they are meeting and doing whatever it takes to reach
the meeting. Once the information is presented there, the chief or
council of elders will take care of informing their communities.

Ms. Lilliam Pollo (United States Council on Disabi1ity) stated
that information is not always enough to implement law. The first step
is crafting legislation, the second step is informing the population.
Ultimately, the third step must be exercising these laws in court.
Citing ADA and IDEA as examples, Ms. Pollo remarked: "Without the case
law, [the laws] don't mean anything."

Mr. Eric Rosenthal, (Mental Disability Rights International)
explained that Mental Disability Rights International (MDRI) is an
intemational human rights organization committed to building
disability rights awareness for people with mental illness or mental
retardation. He said that MDRI is funded jointly by the Bazelon Centre
for Mental Health Law, the leading civil rights law firm for mental
disability in the United States, and the American University Centre
for Human Rights, an international human rights centre. Domestically,
MDRI works to influence the international development community in
Washington, D.C., building disability rights awareness that can be
incorporated into global development work. However, MDRI's primary
focus is working internationally to bolster support for locally based
advocacy groups abroad.

Although countries and cultures are different, Mr. Rosenthal
noted that issues surrounding mental disability are strikingly similar
wherever you go. International law has made some great strides, but
the challenge is in transforming the recognition of people with
disabilities in legislation to the enforcement of these laws. He cited
the example of Hungary, the world's 40th richest country, where
long-term institutionalization and segregation from society is still
the standard.

Mr. Rosenthal distributed some notes adapted from the Yale
Declaration on the Protection and Rights of Children with
Disabilities: Recommendations for International Cooperation and
Support. This working committee document lists five recommendations
for achieving its objective:

(a) Recognize disability rights as human rights. Several
international laws are in place supporting disability rights as human
rights, including the Convention on the Rights of the Child, the
International Covenant on Civil and Political Rights, and the European
Convention. Mr. Rosenthal noted that these laws can be applied when
domestic laws are lacking, as was done recently in New York State. He
remarked that the "genius" in the Convention on the Rights of the
Child is the positive emphasis on supportive services and insistence
on the integration of children with disabilities into the community.
He emphasized the latter, noting that "the principle of community
integration has been adopted into international law, and we should use
these mechanisms whenever possible";

(b) Include disability rights within all programmes, including
civil society and democratization programmes. Disability rights need
to be built into all programmes to be truly effective. This is not
just a policy matter - it is an international obligation. Small grass-
roots organizations spread their meagre resources very far without
domestic or international recognition. Including disability rights in
all programmes would shift focus and support to these organizations;

(c) Promote locally based advocacy. Mr. Rosenthal observed that
locally based advocacy groups have "an incredible level of
sophistication." They know how to push their issues (and how to spread
their resources), but they need help in developing linkages with other
groups, especially in their own country, as well as abroad. Again,
problems are very similar in developing countries, and each country
does not have to reinvent the wheel. Networking and exchange help to
empower and inspire;

(d) Promote systemic adoption of best practices. Model
programmes should never be a temporary solution. In many cases,
Governments will not support locally based solutions even though they
are pouring money into long-term institutions. By connecting locally
based groups, model programme information can be shared. If you can
present the big picture, highlighting these model programs at the
local level as an alternative, the Government can be persuaded to
shift resources from the institutions to the programmes, and these
programmes can help people with disabilities away from the
institutional setting;

(e) Promote inclusive national and international planning for
human rights enforcement and reform of service and support systems.
The Standard Rules recognize that people with disabilities should
participate at every level of policy planning and implementation.
International donor agencies need to address how they can incorporate
locally based groups now working in isolation. By bolstering the
locally-based groups, agencies can affect people with disabilities in
a positive way, while ensuring the success of their programmes.

Next, Catherine O'Malley of MDRI explained that the Americas
Group for the Rights of People with Disabilities is a joint project of
MDRI and the Pan American Health Organization. The Americas Group
promotes the rights of children and adults with disabilities by
drawing on the experience of participants of diverse backgrounds, with
a special emphasis on locally based advocacy groups. Ms. O'Malley
emphasized that the "Americas Group" was plural, not possessive: it is
an effort aimed equally at North, Central and South America.
Emphasizing integration and creating customer-driven services, the
Americas Group will further its goal in four ways:

(a) Fostering exchange among consumers, self-advocates, family,
mental health professionals, Governments, education agencies, human
rights agencies, and regional and international donors to share ideas,
experience and best practices;

(b) Building regional advocacy training workshops taught by
peers. These workshops will discuss the Standard Rules, how to apply
them, how to build alliances for systemic reform, and finding the
guidelines to strengthen legislation and to press for implementation,

(c) Fostering a communication and collaboration network. Networks
for mental disability groups are less developed than in the physical
disability arena. The aim is to link consumer and grass-roots advocacy
organizations with each other and with their Governments, with the
expectation that "affinity groups" will form around common issues of
interest, such as women and disabilities, children and disabilities;

(d) Forming a regional constituency. As the participants in the
Americas Group draw together, a strong regional link is formed that
can push for results in the creation, recognition and enforcement of
rights for children with disabilities. Working on the basis of the
Organization of American States' Inter-American Covenant of Rights to
prohibit discrimination against people with disabilities, the Americas
Group wants to adopt a meaningful convention that groups know about
and that they can encourage their Governments to support, creating a
framework for influencing government that includes people with
disabilities.

Some 150 organizations in 21 countries of the Americas have
already expressed their interest in joining the Americas Group.
Drawing upon varied strengths, "the Americas Group creates space for
voices that are not often heard the voice of children and people with
disabilities."

Finally, Charlotte Oldham-Moore of MDRI discussed mental
disability issues in Romania. In 1989, Romania began the transition to
democracy. At that time, 80,000 children were in orphanages. Despite
the worldwide attention that the Romanian orphanages attached, the
number of children institutionalized grew to 105,000 in 1992.

Although international donor agencies made some improvements in
services, the agencies made no real effort to promote the integration
of children with disabilities into the community. Romania has a
complex system of custodial caretaker institutions, but family
supports in the community are absent. When a family is considered
unable to meet a child's needs, institutionalization is the only
presented solution for "irrecuperables." Families are broken up, with
little placement of children with disabilities in natural or adoptive
families.

Ms. Oldham-Moore stated that international agencies and
nongovernmental organizations must promote community integration for
children with disabilities to prevent further human rights abuses.
They must also engage and support local advocacy organizations
critical to the success of reform programmes. At present, the MDRI
Central/Eastern European Initiative is working with a large family
organization to increase advocacy. This 2000-member organization is
building upon the work of non-governmental organizations to train
experts in service provision, is working to challenge the Government,
and is establishing linkages to support and teach about model
programmes. Ms. Oldham-Moore stated that there is a real momentum
building in these locally based groups: "People are hungry for
advocacy, and they are hungry for change. They need our support."

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Pre-workshop activities

Some 33 Global Workshop participants from 21 developing countries
took part in pre-workshop activities especially designed for them.
Each activity was intended to provide technical assistance and
training, as well as opportunities for the participants to network and
share their own experiences with children with disabilities and their
families. Beginning with an orientation, conducted by the Academy for
Educational Development, participants were given logistical
information about the upcoming activities, as well as a substantive
review of the workshop agenda.

Next, the participants took part in a discussion on the theme
"The role of empowerment, networking, and advocacy in grass-roots and
non-governmental organizations capacity-building," conducted by the
African Development Foundation and the World Institute on Disability.
The discussion provided a lively exchange of their knowledge of the
barriers to full inclusion of children with disabilities and the
strategies being used to overcome those barriers, including the
identification of groups to work within each country to achieve
change.

The participants were taken by minibuses to several school sites
in Anne Arundel County, Maryland, to visit inclusive classroom
settings and early intervention programmes. At each location, the
participants were given background information on each programme by
teachers, health and social service practitioners. Then they observed
several inclusive classroom settings, interacted with teachers and
students, a parent of a pre-school child, and Maryland state education
officials. These site visit arrangements were made by the United
States Department of Education, Office of Special Education and
Rehabilitative Services and The George Washington University.

Finally, the United States Department of Health and Human
Services, Maternal and Child Health Bureau, presented a talk on the theme "The
communities can experience: establishing family-centred, community-based
services", as a panel discussion of the principles guiding this programme, as
well as its application in developing countries and Central and Eastern
Europe. The panel then worked with the participants to develop action
strategies applicable to their own countries.

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Thirty-fifth session of the Commission for Social Development

Mr. Bengt Lindqvist, Special Rapporteur on Disability of
Commission for Social Development, made an oral presentation on the
findings of the report on his three-year appointment and their
implications for future work. He noted the high level of responses by
Governments (85 replies) and non-governmental organizations (165
replies). One result of the adoption of the Standard Rules on
Equalization of Opportunities for Persons with Disabilities by the
General Assembly in 1993 has been the growing awareness among
Governments of disability issues in all regions, an observed
rethinking of policies, and the introduction of national legislation
based upon the Rules. An important finding has been the growing
pattern of cooperation among Governments, organizations of persons
with disabilities and the non-governmental community. Concerned
members of the United Nations system have made important contributions
as well. The Special Rapporteur observed that positive trends need to
be encouraged and strengthened, but there is still much to be done,
particularly in terms of main streaming. The monitoring exercise
should continue since it provides a basis for reviewing and discussing
experiences. There is a need for new initiatives as well, such as
strengthened advisory services to Governments.

All delegations participating in the discussion supported the
renewal of the mandate of the Special Rapporteur and his Panel of
Experts for an additional three years to the year 2000.

Many delegations reported on initiatives that their Governments
had taken to further implementation of the Standard Rules. For
instance, the European Union had adopted a resolution on equality of
opportunities for people with disabilities, had initiated information
and awareness campaigns and had produced a manual on accessibility.
South Africa had established an office on the status of disabled
persons in the Office of the Deputy President of the Republic, and
disability issues were being incorporated in public policies. One
representative of a non-governmental organization commented that the
Standard Rules represent an important normative statement on
equalizing of opportunities of persons with disabilities.

Several delegations stated their full agreement to the areas
identified by the Special Rapporteur for further action: children with
disabilities, gender perspective, and housing and shelter. Several
delegations directed special attention to the question of children
with disabilities, and the special situation of children disabled in
armed conflicts, since they represent an especially vulnerable group
of the population; a representative of a non-governmental organization
noted that children with disabilities will become adults with
disabilities in the absence of appropriate action. Other issues cited
by delegations include further development of the human rights
perspective, the need to address employment opportunities, empowerment
and sustainable livelihoods of persons with disabilities, and the need
to incorporate the Standard Rules in poverty eradication initiatives.

Many delegations commented on the need for the continuation of
the monitoring exercise and for dissemination of information on
experiences in promoting and implementing the Standard Rules.
Delegations called for strengthened cooperation between United Nations
and the non-governmental community to promote the Standard Rules at
the country level; one commented on the importance of the United
Nations Secretariat facilitating partnerships in support of the
Standard Rules. Another delegation commented upon contributions which
could be made by such regional-level initiatives as the Asia and
Pacific Decade of Disabled Persons (1993-2002). A representative of a
non-governmental organization stated that regional offices of her
organization were prepared to promote, train and contribute to
monitoring the implementation of the Standard Rules.

Several delegations addressed the following questions to the Special
Rapporteur:

(a) In countries without disability policies in place, would the
Special Rapporteur use a best practices or a case-by-case approach to
policy development ?

(b) If his mandate were renewed, what would be the priorities
for Mr. Lindqvist?

(c) How could Governments cooperate best to promote and
implement the Standard Rules within the framework of their own
regional initiatives on disability;

(d) If his mandate were renewed, how would the Special
Rapporteur propose to address the human rights perspective in the
context of the Standard Rules?

(e) If his mandate were renewed, how would the Special
Rapporteur propose to address the question of children with
disabilities, and what would he propose to improve the situation of
children with disabilities?

In reply, the Special Rapporteur made the following comments:

(a) He stated stated that three priorities for further action
were identified in his report: children with disabilities, gender and
housing and shelter. He would also direct special attention to the
matter of mainstreaming the disability perspective in national
development, which he felt would contribute to a normalising of
responsibilities in the field of disability;

(b) As to linking the monitoring exercise with the emerging
human rights agenda, he stated that he was of the view that the
existing human rights entities of the United Nations system can best
do this; an appropriate role for the United Nations is to serve as
catalyst in the identification of issues and trends;

(c) He further noted the need to develop national capacities to
promote, implement and monitor implementation of the Standard Rules.
There is need for more work in field of statistics and disability,
including identification of indicators;

(d) With regard to policy development, he expressed the view
that he knew of no current compilation of good practice, although many
examples exist. In his view, the United Nations could usefully
document this;

(e) He stated that since work on the Convention on the Rights of
the Child had preceded the Standard Rules and since conventions were
of greater policy importance than rules, he was of the view that there
was no need for the Standard Rules to have mirrored the Convention;

(f) He stated that the Asia and Pacific Decade of Disabled
Persons complemented the Standard Rules, and that much could be gained
through closer linking of efforts.

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NGO Statement

The statement set out below was submitted to the Secretary-
General of the United Nations on 20 February 1997 by Inclusion
International, Rehabilitation International, World Federation of the
Deaf, World Blind Union and Disabled Peoples' International.

"The disability organizations meeting you today are the most
powerful in the world. You'll find us in all countries working for
full participation of persons with disability and society - fighting
for human rights and against abuse and discrimination.

In spite of all the efforts made by the United Nations and the
non-governmental organizations, the vast majority of the world's
disabled people are living under miserable conditions according to
1993 United Nations report on human rights of disabled persons.

Persons with disability must be made more visible in all relevant
activities of programmes of the United Nations and in the policies of
its Member States.

The World Summit for Social Development, held at Copenhagen in
1995, gave promises in that direction. In follow up, however, the
Economic Social Council now just talks about "disadvantages and other
factors among disadvantaged groups". The current United Nations
emphasis on poverty eradication is another chance to highlight the
fact that people with disability are the poorest among the poor.

To make disability more visible we need the support of the
Secretary-General. We also need a secretariat with a capacity to act
as the focal point of coordination. We ask that further thought be
given to how we international disability organizations can help you
with this task.

You, Mr. Secretary-General, have often mentioned the importance
of close links between the United Nations and civil society. We, the
non-governmental organizations, represent the interest of women and
men with disabilities worldwide. We are certain you will, and really
are able, to assist us to increase our efforts to work toward full
participation, in close cooperation with the United Nations and its
specialized agencies. Together, we should advise and support the
Member States in working toward the goal of equalization of
opportunities for persons with disabilities.

The United Nations Standard Rules on Equalization of
Opportunities for Persons with Disabilities are a most progressive
human rights instrument and have been widely accepted by many
Governments and certainly all disability non-governmental
organizations. The Standard Rules represent a move away from viewing
disability as a welfare concept to a rights-based approach,
integrating disability into all areas of policy.

But we must remember that the majority of United Nations Member
States have not even started to use the Standard Rules, and many
others need continued support and advice. We must remember that the
protection of human rights for most persons with disabilities is still
alarmingly weak.

That is why the work of the Special Rapporteur on Disability and
the Panel of Experts on Disability of the Commission on Social
Development must continue, as suggested in a draft resolution
submitted by Sweden at the thirty-fifth session of the Commission.

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Special contribution by Dr. Eustace Kyroussis, Head of Mission of Médecins sans frontières of Belgium

We must not forget the handicapped people of Vardenis institutions.

In Vardenis, at 2000m of altitude, 250 people spend their lives
in a former maternity house. They are either chronic psychiatric
patients or mentally or physically handicapped people. Most of them
have families. Most of them could live in society, with other people,
with minimal support. All of them want and can express themselves,
communicate, feel, react, create, sing and dance. They need
affection, and they can give affection back. Their work was displayed
at an art exhibition of artifacts made by handicapped people, at the
library of the Department of Public Information of the United Nations
Secretariat, from 3 to 10 December 1996: the exhibit featured carpets,
shoes, clothes and hand-knitting.

And yet they have to live their whole lives, in an environment
that has very little to do with ours. Things that for us are
considered as standard are not available in their house. They have to
pass the rest of their lives in an old maternity home, at the
outskirts of Vardenis town, that was not built to be used as a
permanent habitat. They were moved there after their institution had
been bombarded in 1992.

Nobody has a single square centimetre of his or her own. In a
room where, in the past, two mothers were happily breastfeeding their
babies for the first time, now five or even more people have to spend
their whole lives. But many of them still have to sleep in the old
corridors. In the same building, in the past a mother that just
delivered had a small cupboard to put her personal things for the few
days that she would spend in the maternity house; the current
residents do not even have such a cupboard for a whole lifetime.

In the past, a mother who had just given birth in the building,
did not mind if the temperature outside was -30C, which is the case of
Vardenis. The hospital was warm, and she could have gotten a hot
shower, use a clean toilet and eat proper foods. Today, the patients
have even forgotten to worry about all these things. They had to get
used to much lower standards. They cannot worry if there are modern
heaters installed this year but diesel cannot be provided in
sufficient quantities. Can we hope that the winter will continue to
be so mild as in November 1996?

They do not worry anymore, after many years of being there, that
they can have their clothes washed only once a month. It became
natural for them to have to fight for their food. Those who are aware
of the situation try their best. ECHO, MSF-Belgium, OXFAM, IFRC,
Genishian Fund and FAR have given help. The ministries give the help
they can, within their capabilities. The directors of the
institutions exhaust all opportunities to get essential things for the
patients. Despite all these, the patients still have many problems to
face: heating, food, convenient space to live, medical follow-up,
washing facilities, proper hygiene, even clothes and shoes.

Many times, the same arguments are expressed by different people:

Armenia has many needs, priority has to be given to "normal"
people, one cannot expect the standards existing in rich countries to
be applied here. Who can say if these people are not "normal"? They
can create beautiful things, they can serve themselves. Most of them
just need a little support from other people in order to live with
them. This support has been refused by their families, they were not
lucky enough. During major crises, civilized societies first
supported their weakest and most vulnerable members: mothers,
children, old people. Armenian society has a long-lasting tradition
to be very sensitive to these groups of people. In Vardenis, one can
find all these groups. Only that they are even more vulnerable, due
to more specific needs. Eventually, they pass their life in a big
building, forgetting how real life could be. The local society of "normal"
people remembers them when they need workers for their fields,
to be paid with a box of cigarettes.

In the meantime, hoping hat they will not be forgotten, some
individuals are to create a support structure in society for the
reintegration of these people, by seeking occupation possibilities,
counselling and contact with their families. Until those efforts have
concrete results, the patients of Vardenis will just have to hope that
at least they are not forgotten. Of the 140 patients in the
psychiatric clinic, 6 died in the month of November 1996. Those who
are left every month continue to scratch out a daily living in the
same cold space and continue to work in the occupational facilities
established in their institutions: they are making carpets, shoes,
socks, sweaters and clothes for their own use, and they are painting,
singing, dancing, and playing - hoping not to be forgotten. What
makes them different from us? Only the fact that we gave them a label
"handicapped" because they need special care.

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Statement by DA (Yes we Can) International Ltd

The wheelchair of the future - today

In June 1994, 15 courageous people in wheelchairs undertook and,
within five months, successfully completed a gruelling 9,000km peace
marathon through every one of the 15 former countries of the former
USSR.

In September 1995, five representatives of neighbouring countries
successfully ascended in wheelchairs one of the highest mountains in
the world - Mount Kazbek (5,047m) - located in Georgia, former USSR.
That event was dedicated to the fiftieth Anniversary of the United
Nations.

Both events ran under the auspices of the United Nations "Society
for All" programme, and were aimed at promoting acceptance of persons
with disabilities as equal members of society.

In November 1996, a six-month 10,000km ecological wheelchair
marathon commemorating the Chernobyl nuclear tragedy was successfully
concluded. Its main purpose was to heighten society awareness of one
of the main causes of disability in the Russian Federation - hazardous
environmental conditions.

All these events had one thing in common that not only made them
possible but also warranted their success - the wheelchairs used by
the participants. The event organizers approached major wheelchair
manufacturers around the world, asking them to supply their
wheelchairs for the events, but only one of them dared to meet the
challenge - DAB International.

Given the fact that on the average, a wheelchair user rarely
covers even 1,000km annually, the 10,000km marathon represented at
least 10 years of rigorous use under adverse climate conditions on
rough urban and rural terrain of Russia. The average useful life of a
conventional wheelchair in the developed countries is 3.5 years. Such
a wheelchair is not likely to last more than a year in the much more
demanding environment of a developing country. To serve the vast
disabled market effectively, the Government of the Russian Federation
formed DAB International, a joint venture with DA International Ltd.,
a United States corporation specializing in research, development and
manufacture of durable medical products for developing countries. One
such product developed and patented by DA is the weldless wheelchair.

The main unique feature of its design is the replacement of all
welded joints with composite clamps which eliminates the major cause
of structural failure - breakage of welded joints - while providing
substantially increased strength and durability. Maintenance and
repairs are minimal, and can be easily performed in the field by a
layman, eliminating the need for a service infrastructure. Absence of
welded joints provides for high design flexibility, allowing not only
easy customizing but also easy conversion from rigid to folding frame
and, with optional attachments, to a lever drive, hand trike etc. The
weldless design allows the wheelchair to be assembled and customized
at the regional level by the disabled, minimizing shipping and
distribution costs, creating much needed employment opportunity for
the disabled, and providing invaluable feedback for design
improvements.

Another advantage of the design is its manufacturing efficiency.
Components are fabricated utilizing a synchronized manufacturing
process and local materials. As a result, a significant reduction in
cost is achieved, making it possible for the disabled to acquire a
strong, modern, lightweight and highly versatile wheelchair at a
fraction of the cost of a comparable product.

At the present time, this wheelchair and other related
rehabilitation products are being produced by DAB International at its
manufacturing plant in St. Petersburg. The plant is equipped with
advanced western machinery, is staffed with highly qualified personnel
and has a one-shift production capacity of 50,000-plus wheelchairs.

The main purpose and philosophy in creating DAB was to better the
lifestyle of the disabled. This philosophy led to the establishment
of close ties with the disabled community. The All Russian Society of
the Disabled consisting of 2.5 million members - the largest in the
Russian Federation and Europe - highly regards and recommends DAB
products. In October of 1995, they chose to exhibit exclusively DAB
products at the International Rehabilitation Equipment Exhibition
(REHA) at Du"sseldorf, Germany. The wheelchairs received solid
approval from the end-users and distributors around the world.

DA continues to work closely with the physically challenged
worldwide, developing new products and improving existing ones.

Note on UCP United Cerebral Palsy of New York City, Inc.

A word of information about United Cerebral Palsy of New York
City (UCP/NYC) is now just a click away. A new World Wide Web site,
with comprehensive information about cerebral palsy, resources for
families, places to volunteer and much more, has just been launched by
the 50-year-old agency. This uniquely designed non-profit site would
be the perfect centrepiece for an article looking at new ways people
with disabilities, their families and friends can access information
and resources.

A few of the features to be found at the UCP/NYC site are:

(a) Large "hot links" and other design features to allow easy
navigation;
(b) Original artwork by the people in UCP/NYC programmes;
(c) A chat room that encourages visitors to exchange information
and ideas;
(d) Guest columnists, calendar of events, ways businesses can
help and much more.

For more information, contact:
Ms. Kristie Afzali
Communications Coordinator
Tel. (212) 683-6700 ext. 212

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Propagation of the concept of community-based rehabilitation (CBR) in Sri Lanka

The concept of community-based rehabilitation (CBR) is not alien
to the Sri Lankan society. Apart from having special institutions to
handle more complicated cases, community-based rehabilitation within
the family of its aged and disabled members has been practiced from
time immemorial in Sri Lanka according to recorded history. The
ancient kings who ruled the country were also concerned about the
well-being of the disabled. Therefore, Sri Lankan society only needs
the assistance of the innovations made in this field, rather than any
special training in introducing it as completely a new concept.

During 1993-1994, the then Ministry of Rehabilitation,
Reconstruction and Social Welfare took an initiative in developing
this concept, keeping in view the above-mentioned facts. United
Nations bodies such as UNICEF, came in a big way to assist the
projects launched by the Ministry. There was even a move to create a
special faculty in the National Institute of Social Development to
cater to the present day needs of CBR, keeping in mind the numerous
new approaches made in this sphere in the rest of the world.

Consciousness of the grass-roots level organizations and
interested individuals was aroused by having training classes and
appointment of local-level trainers to teach each and every household
how successfully they could manage their own family members who are
disabled, without allowing them to experience the loneliness and
insecure conditions in institutions set apart for disabled by
Governments and non-governmental organizations. Moreover, only about
2 per cent of the persons reported to be disabled were able to secure
accommodation in these institutions, leaving the majority unattended.
Therefore, the expansion of the services of CBR programme to
divisional and village levels was hailed by those who had been
neglected so far. Action was taken to improve the economic conditions
of the families with such disabled members, and special legislation
was also drafted to safeguard the rights and privileges of the
disabled community. This programme is being carried forward by the
present authorities, and its objectives are not beyond reach during
the next few years in Sri Lanka, when all disabled persons will
receive the warmth of their family and care of their society, and
institutionalization will be needed by only a few chronic cases
suffering from some kind of incurable disability.

For further information, contact:
Christie Silva
Former Secretary
Ministry of Rehabilitation, Reconstruction and Social Welfare
Sri Lanka

^Return to top.

Note on the Fourth People First International Conference
(Anchorage, Alaska, April 1998)

In 1973, a group of individuals with development disabilities
living in Salem, Oregon, started the People First organization. These
individuals quickly became known as self-advocates who would speak out
and speak for themselves. Since that time, the self-advocacy movement
has grown considerably, with the formation of over 500 self-advocacy
groups worldwide. Because of this international movement, Self-
Advocates Becoming Empowered (SABE) was founded in 1991 as the
national organization seeking to unite individual self-advocacy groups
to advocate for the goals of the movement at a national level.

The mission of SABE is to improve the quality of life for
individuals with developmental disabilities, through:

1. Teaching individuals with development disabilities to speak
out for their beliefs.
2. Learning about rights and corresponding responsibilities as
citizens of the United States of America.
3. Learning how to make choices and decisions that affect their lives.
4. Seeking to obtain accessible transportation.
5. Closing institutions.
6. Ending segregation through the use of sheltered workshops.
7. Promoting inclusion practices in all schools for children
with disabilities.
8. Having choices in friendships, relationships and the
expression of sexuality.

People First is an internationally recognized organization for
people with disabilities who believe in, practice, and teach self-
advocacy skills to other people with disabilities. With over 500
People First chapters in the United States, Canada and many foreign
countries, people with disabilities are speaking out and speaking for
themselves.

In April 1998, Anchorage, Alaska, will be the host city for the Fourth
People First International Conference. The second of its kind to be
held in the United States, this Conference is planned by and for
people with disabilities. Some 1,000 people with disabilities from
all over the world are expected to attend this three-day leadership
Conference. Major programme features include workshops on self-
advocacy, leadership training and promoting the rights of individuals
with disabilities worldwide through the development of an
international network.

Initial planning for the conference began just after the Third People
First International Conference, which was held at Toronto. People
First of Alaska was the successful bidder for the Fourth Conference.
Since that time, a Conference steering committee was formed and has
been raising funds, recruiting volunteer support, and developing
public relations and marketing plans. Our primary goal is to ensure
this Conference is planned by and for people with disabilities.

For further information contact:
Mr. Joe Pichler
Conference Chair
Fourth People First International Conference
2330 Nichols Street
Anchorage, AK 99508
United States of America
Tel: (907) 272-8270
Fax: (907) 274-4802
E-mail: aypplfa@uaa.alaska.edu

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United States National Council on Disability honours Bengt Lindqvist

On 20 February 1997, the United States National Council on
Disability hosted a reception in Washington D.C., to highlight the
achievements of Bengt Lindqvist, Special Rapporteur on Disability of
the Commission for Social Development. During the programme, Council
Chairperson Marca Bristo read a letter of support from President
Clinton, and presented The Special Rapporteur with a scroll noting for
his dedicated service and historic contributions to ensuring equality
of opportunity, full participation, independent living and economic
self-sufficiency for people with disabilities worldwide. The letter
from President Clinton is set out below.

Mr. Lindqvist, through his fine work as the Special Rapporteur on
Disability for the Commission for Social Development, is helping
nations accross the globe to understand that people with disabilities
have the fundamental right to participate fully in every facet of
society. His efforts underscore the importance of building
communities where everyone shares the same rights and privileges.

The United States of America has been very successful in reaping
the benefits of a more inclusive society, but we still have much to do
to fulfill our promise to citizens with disabilities. My
Administration is firmly committed to continuing the vigorous
implementation and enforcement of the Americans with Disabilities Act.
We are equally committed to working with Mr. Lindqvist to take its
message of inclusion, empowerment and independence to every country in
the world. I am confident that by doing so, we can create a brighter
future for us all.

(Signed) Bill Clinton
President
United States of America

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The Disabled Persons Bulletin is published three times a year in
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address correspondence to:

Editor, Disabled Persons Bulletin
Division for Social Policy and Development
United Nations Secretariat, Room DC2-1342
New York, NY 10017
UNITED STATES OF AMERICA

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