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Down's Syndrome Association (DSA), General information in Detail

Children And Adults With Down's Syndrome And Other Mental Disability, Whom DSA Unites And Helps
DSA Activity. Information And Publishing
Consultations, Early Intervention, Education And Medical Aid
Arts
Sports
Social And Humanitarian Support
General Meetings
Rehabilitation Of Disabled Orphans In A State Institution
Public Relations, Fundraising, Influencing Legislative And Executive Bodies, Advocacy, Educating Society
Participation In International Conferences; Organising Conferences And Seminars
Children With Down's Syndrome In Russia. Some Figures

The Down's Syndrome Association (DSA), a society of parents of children and adults with Down's syndrome, was established in Moscow in March 1993. DSA works to ensure the survival and continued development of children with Down's syndrome and also to promote their integration into society as complete human beings with equal rights.
DSA cooperates with the Presidential Administration, the Ministry of Labour and Social Development, Moscow Government Committees of Public Health and Social Security, the Academy for Postgraduate Medical Education, the Institute of Europe among others.
DSA has signed cooperation agreements with the Ministry of Education and Moscow Government Education Committee under which DSA is an adviser to these bodies on Down's syndrome. DSA is a member of the Moscow Duma Council of Experts.
DSA is an associate member of EDSA (European Down's Syndrome Association), and a winner of the BICE* prize for defence of children's rights (1996).
*BICE (Bureau International Catholique de l'Enfance) was founded in 1948, and it has the status of adviser to UNICEF, UNESCO, the European Union, the Council of Europe and the United Nations.
Among other international partners of DSA are Mental Disability Rights International (MDRI), "Lebenshilfe" (Germany), International Organization of Assistance to Disabled Artists "Dissimilis", "Open Society" Institute.
Our work and the problems it deals with have had a broad public response in Russia and abroad.
After the publication of the first newspaper article Don't Condemn Children with Down's Syndrome to an Orphanage in "Moskovskaya Pravda" in October 1993, many articles and TV programs on problems of children with Down's syndrome have appeared in Russia, most European countries, the USA and Australia. (See publications).

Children And Adults With Down's Syndrome And Other Mental Disability, Whom DSA Unites And Helps

At present (January 2000) DSA represents and supports more than 230 families in Moscow (138 children and 93 adults with Down's syndrome) and 79 families in Moscow Region, more than 280 families in other Russian regions and more than 15 families in the CIS countries. (See photo album "Our Children Unite Us").
As well as this, with the DSA's support 39 parents' groups have been set up in various towns, and an information centre has been established for Siberia and the Far East in Krasnoyarsk. (See " Down's Syndrome Associations in Russian Regions").
We give special support to the Vologda Branch, which was the first regional organisation of parents of children with Down's syndrome.
We are involved in a scheme to improve the living conditions and education of 150 orphans with severe mental and physical handicap who live in a Moscow orphanage.

In Russia today 30,000 mentally handicapped children are kept in state institutions separated from their parents. DSA is fighting for the right of these children to live with their families, to be educated and rehabilitated and become members of society.

DSA Activity
Information And Publishing

DSA translates, prepares for publication and distributes up-to-date information on Down's syndrome and modern approaches to supporting people with mental disabilities, free of charge. (See Photo album "Information Centre")
This work was started in the summer of 1993 when a brochure for parents of newborn babies with Down's syndrome If your baby has Down's syndrome was compiled. By December, 1993 twelve different brochures published by British, German and American DSAs were translated and printed out.
In 1993 by an order of Moscow's senior obstetrician and in consequence of talks with senior doctors of the city's maternity hospitals all hospitals were provided with the DSA's brochures so that they could be given to parents of newborn babies with Down's syndrome.
In 1994 - 1995 the translation of Small Steps, an Early Intervention Program of Macquarie University (Australia), was carried out. In 1996 the text of the Small Steps video was translated. In the same year it was dubbed into Russian thanks to financial support of the Australian government and technical support from two TV companies: RTL (Germany) and Russia channel 4 (NTV). Three Russian Ministries (Education, Public Health and Social Security) found it possible to finance the publication of this program, and it was published in 1998. The Council of Experts of the Ministry of Education has approved it and recommended it for use throughout Russia.
In the summer of 1997 a small number of copies of 21 books and brochures on modern approaches to the support of mentally disabled people was printed. This project was financed by the Ministry of Education.
In 1997 together with Russian channel 4 (NTV), DSA dubbed into Russian an Australian video Schooled for Success about the integration of children with Down's syndrome into local comprehensive schools.
With the support of an Italian TV company the Association and the Modern Arts Centre have made a short movie about a romance between two people with Down's syndrome. The movie was created on the basis of a famous Belgian film The Eighth Day. Its leading actor Patrick Delicien, who has Down's syndrome, received the Best Actor Award at the International Film Festival in Cannes (1996).
With the technical support of an Italian TV company two short videos have also been dubbed into Russian. These are: One of us (Great Britain) - about psychological support of parents of newborn babies with Down's syndrome - and Bradly's story (Australia) - about providing employment for adults with Down's syndrome.
The First Information Centre on Down's Syndrome for Siberia and the Far East has been set up in the Krasnoyarsk Institute for Teachers' Postgraduate Education. DSA provided the Centre with up-to-date material on Down's syndrome.
By the end of 1998 the total number of books and brochures translated was 38. (See List of literature and videos).

Consultations, Early Intervention, Education And Medical Aid

Since the summer of 1993 the DSA has been giving consultation to parents of children with Down's syndrome: answering their letters, providing them with relevant literature and video programs on modern methods of treating and teaching children.
Since January 1993 specialists in massage and physiotherapy have visited babies and toddlers under 3.
Since the autumn of 1994 individual lessons and consultations have been given by a speech and language therapist.
In the autumn of 1996 DSA established a model system of services - educational, medical and social - for children with Down's syndrome and their parents from the time of the child's birth. This system provides:

Arts

The DSA's Creative Arts Centre for adults with Down's syndrome has been open for some years. Lessons in decorative and applied arts, movement, and also piano and recorder lessons and rehearsals for our orchestra the Magic Flute are given there. Our musicians have given concerts with great success. The Applied Arts Workshop takes part in exhibitions. (See Photo album "DSA Creative Arts Centre". "Applied Arts Workshop" and "Our Musicians"). Work of the Centre began in November 1993. Until May 1994 it existed in the form of a Sunday club for adults and their parents. Adults with Down's syndrome learned to paint under the guidance of Ye. Lindin, a Moscow artist.
An applied arts workshop opened on a daily basis in the Autumn of 1994. At the same time the drama studio began its work and individual recorder lessons started. After a year piano lessons were added. Later an ensemble of recorder players was set up.
In 1996 Sergei and Ludmila Koloskov gave charity concerts in the Embassies of the Netherlands, France and Italy. Musicians with Down's syndrome also played there, and an exhibition of work produced by adults who attend the DSA's Arts Centre was staged.
In April 1997 artists and musicians from the DSA's Arts Centre held a series of performances in Norway by invitation of the international organisation of assistance to disabled artists "Dissimilis". In the summer of 1997 they gave concerts in Moscow: in the Medical Academy, Norwegian Embassy, Central Youth Library and psycho-neurological institution No. 30.
On September 14, 1997 musicians from the DSA's Arts Centre took part in a grand concert held at the Central Concert Hall in Oslo, Norway. The joint performance of handicapped Russians and Norwegians and Norwegian pop and TV stars received a standing ovation from an audience of more than 1000.
In autumn 1997 the "Magic flute" orchestra was created. Its performances always meet with a success and it takes part in all DSA events and meetings.
In 1998 we started movement classes - "The Frezzy Grand Project".
At the end of 1999 work started on an experimental theatre workshop called "The Theatre of the Simple-Hearted". (See Publications).

Sports

Access to sport was first given to DSA members in August 1994 when a group of families having children with Down's syndrome went to Holland in order to take part in the World Special Football Championship as football fans.
Since 1994 children and adults with Down's syndrome have been involved in a horse-riding program in the Ecological Centre "Living Thread" . In 1998 DSA gave financial support for the participation of its members in this program.
Since 1996 adult DSA members with Down's syndrome have taken part in Special Olympics under the direction and with the support of the Moscow and Russian Special Olympics Committees.
At the beginning of 1998 DSA initiated regular physical training for adults with Down's syndrome in the Institute of Physical Education.
In the spring of 1998 two teams of sportsmen with Down's syndrome - members of DSA - took part in an international competition in Norway: in Nordic Special Olympics (swimming) and in the Vivil competition (track and field athletics).
Under the Special Olympic movement we have had our own sports club - Club D - since 1999.
In the summer of 1999 one of our sportsmen, Vladimir Sanotskii was in the Russian national swimming team and took part in the Special Olympic Games in the USA, coming fourth in his event.
DSA members have won events in Moscow, Russian and international swimming and track and field competitions. (See "Photo album. Our Sport").

Social And Humanitarian Support

Starting in the summer of 1993 DSA has been providing families in Moscow and Moscow region with social and humanitarian support and financial aid to those who unexpectedly find themselves in desperate straits.
In the spring of 1994 a group of families having children with Down's syndrome spent their holidays in the Crimea. Expenses were paid by the Moscow Committee for Families and Youth.
Later DSA strives similar rest in different guesthouses free of charge for families regularly with supporting of Federal Foundation of Social Support, Moscow Committee of Social Welfare, Moscow Committee on family and young people affairs and others.
Since the autumn of 1997 a DSA social worker has been making home visits to those families having adult with Down's syndrome who are in need of assistance.
DSA regularly organises the receipt, transport and delivery of humanitarian aid, obtains free tickets to concerts and other events, and New Year's entertainments.

General Meetings

In 1998 two family meetings of DSA members took place in the Republic Children's Library. The first was on 10 January 1998 at a New Year's party and the next on 28 March 1998 to celebrate the fifth anniversary of the DSA's work. At least 200 families in membership of DSA as well as representatives of DSA's partners - Russian and foreign charities, and representatives of regional DSAs attended this party. Musicians from the Arts Centre and professional artists gave concerts. DSA was provided with free drinks and refreshments by Coca-Cola, Dunkin' Donuts and "Bakery on Myasnitskaya" and presents from commercial and non-commercial organisations were distributed.
In 1999 there were two general meetings - for New Year on 10 January and on 14 June for the Association's re-registration.
On 10 January 2000 we held our traditional New Year's party with a concert given by our musicians.

Rehabilitation Of Disabled Orphans In A State Institution

In 1994 the life of Natasha M., a nine year old girl with Down's syndrome, was saved by DSA's efforts. She was suffering from emaciation and lack of care in one of Moscow's orphanages. DSA arranged for her treatment and rehabilitation in Tushinskaya Children's Hospital from December 1994 to December 1995. DSA employees helped to look after her in the hospital on a daily basis. Our English volunteer, Andrew Walker, has been visiting Natasha for five years, and she now goes to him once a week for a home visit.
In the autumn of 1996 DSA launched a unique international project of care for and rehabilitation of disabled orphans in a psycho-neurological institution. This is a joint project of the Association, Russian Orthodox Church and the institution. It is supported by a number of influential charity organisations and specialists from France, Switzerland, Germany, Norway and Denmark. A department of mercy and rehabilitation for 35 bedridden children orphans in critical condition has been set up through the joint efforts. Thanks to the loving care and attention given them these children have returned to life! We could not remain indifferent to other children with multiple handicaps, who were also suffering from lack of care in this institution (it accommodated 400 children). Soon the number of the children in the new department doubled, and later it rose to 90. In the autumn of 1998 the whole department was transferred to a different internat for mentally handicapped children. There were 117 disabled orphans in the department of mercy and rehabilitation. The children are getting better, gaining weight, acquiring new skills and becoming more independent. Many of them have learned to play with toys, feed themselves, walk or use a wheelchair, and communicate with children and adults. At present the project caters for 150 children. (See photo album "Return to Life")

Public Relations, Fundraising,
Influencing Legislative And Executive Bodies, Advocacy,
Educating Society

Besides giving direct help to families and orphans DSA makes efforts to educate society on problems of Down's syndrome through Russian and foreign media. Articles in newspapers and magazines, TV programs, participation in and arranging conferences, personal meetings with officials are also used to influence governing bodies in order to involve them in the process of making new legislation, establishing modern family support system, reforming the system of institutions.
In June 1993 the Association's first charity concerts in Luxembourg were given by Ludmila and Sergey Koloskov. Further concerts became a regular source of funds for the DSA's work.
In December 1993 the first DSA's press conference was held.
In June 1994 DSA shot its first video film in a Moscow institution for orphans with severe mental disabilities in order to attract the attention of the public and officials to living conditions of these social orphans. DSA submitted the video film as well as a letter in which the living conditions in this institution were described to the Presidential Committee for affairs of disabled people. Video materials were also given to the Russian channel 4 (NTV).
In the summer of 1995 the first DSA appeal was submitted to the President. Reports of this event were shown on a Russian TV news program, and the BBC. The reply from the Presidential administration gave an instruction to the government which notes "the importance of resolving the problem of services for children with Down's syndrome and their acceptance by society as people with the same rights and opportunities as other members".
In June 1995 Sergey Koloskov, the president of DSA, and Natasha M. who was treated in Tushinskaya Children's Hospital met Princess Diana, who was visiting Moscow as Patron of the hospital.
In February 1996 the English "Daily Mirror" published an article in which Princess Diana called on the public to help Russian children with Down's syndrome.
In May 1996 DSA took part in arranging and making a video which was produced by CAPA, a French TV company. The video showed the plight of disabled children in state institutions and told of the DSA's work,
In the summer of 1996 Sergey Koloskov, the DSA's president, spoke in a press conference at the International Press Centre. A second appeal to President Yeltsin, made in conjunction with leading Russian Academicians Professors Baranov and Lubovsky and Dr. Severniy, president of the Association of Independent Child Psychologists and Psychiatrists. A report of this event was shown on Russian TV news. A series of proposals for a national program of support for mentally disabled children was submitted to the Russian Presidential Administration. The reply stressed that the problems of the current social support system and specialised educational services needed for children with Down's syndrome and other disabilities had been starkly revealed, and that the Ministry of Education supported the proposed reforms in the system of rehabilitation and support for such children.
In autumn of 1996 Sergei Koloskov, the DSA's president, addressed the heads of departments in the Council of Europe in Strasbourg. The Bureau International Catholique de l'Enfance awarded DSA the Marie-Paule Eisele Prize for protecting children's rights. Mr. Koloskov had a talk with Lenny Fisher, the President of the Council of Europe's Parliamentary Assembly.
In the summer of 1997 more than 2000 brochures prepared by DSA were distributed by the Presidential Administration among heads of regional administrations and of regional bodies of public health, education and social security.
In January 1998 the activity of DSA was presented to the officials of the Committee on Education of Moscow government. Mrs. Kurneshova, the first deputy chairwoman declared the readiness of the Committee to provide an appropriate education for 50 children with Down's syndrome under seven living at home, in accordance with the DSA proposal.
On May 10, 1998 a report of the DSA's work (excluding its work in department of mercy and rehabilitation) was shown on a popular Sunday TV program The Seventh Day. The report gave information on the DSA's early intervention service Small Steps, the Centre for Speech and Language Development, and the Arts Centre. During this broadcast Mrs. Dmitrieva, the Minister of Labour and Social Development, commented favourably on the Association's work. After studying this material the Minister declared the readiness of the Ministry to cooperate with parents' organisations. She also expressed the intention to provide financial support for the activities of these organisations.
On 1 June 1998 (Children's Protection Day) a meeting at the House of the Government ("White House") was held. People spoke in support of the rights of mentally disabled children. An appeal entitled Let each child have a mother was handed to the Russian Government. A report of this event was shown on Russian channel 4 (NTV).

In February 1999 in TV reports on the problems of the internat system and deinstitutionalisation which the Association had raised Mr. Koloskov appeared with the president's press secretary, the deputy prime minister, the minister of social security, and the director of the Moscow Office of UNICEF.
Between January and April 1999 there were articles in the Sunday Times and Le Monde and reports on ¼¬— (USA), CNN and others. On DATE an article entitled "Handicaps Caused by Drunken Parents" was published in Moskovskiy Komsomolets, the most widely-read Moscow newspaper. It contained hostile opinions about people with mental handicap and their parents, and was speaking allegedly on behalf of the man in the street. The editorial office ignored numerous phone calls from outraged parents of handicapped children. The Association decided to increase the reaction from informed opinion, and as a result the editor received letters from the ministry of education, and other influential organisations, commenting on the incompetence of the article's authors and the false information which had been given. This caused the editor to make a public apology and print a further article entitled "The Enchanted Princes", which expressed more positive views on the problems facing handicapped children and their parents.
From autumn 1998 - winter 1999 two independent researches were carried out by Human Rights Watch and Mental Disability Rights International - UNICEF with the assistance of the Association, and reports were drawn up. The Association helped in editing Russian version of MDRI's report.
From December 1998 to January 1999 with financial support from the Open Society Institute the Association with ATV made TV broadcasts on the popular talkshows Pressclub with Kira Pashutinskaya and "We" with Vladimir Pozner concerning the problems of people with mental handicap.
In 1998-1999 Mr. Koloskov had meetings with leaders of two of the four major Duma fractions and deputy heads of Duma committees on social policy, healthcare and education, with ministers and deputy ministers of education and social security.
In 1999 at the request of the president's press secretary, the minister of social security and the deputy minister of education they were provided with a series of documents, videos and photographs concerning the plight of people with mental handicap in Russia, and on the association's activities. Mr. Koloskov had a meeting with the UN High Commissioner for Human Rights and western politicians. Mr. Koloskov made a speech at a preliminary session of the UN Committee on Children's Rights and at roundtable discussions organised jointly by UNICEF and the Ministry of Social Security.

Participation In International Conferences;
Organising Conferences And Seminars

In August 1995 a DSA delegation took part in the Third European Conference on Down's Syndrome Towards an Inclusive Society in Dublin. Mary Robinson, the Irish President, opened the conference. The visit was financed by the International Women's Club ("Action for Russia's Children").
In September - October of 1995 the First Moscow International Workshop on Down's syndrome Towards a Brighter Future through Family Upbringing, Early Intervention, Integration and Employment took place at the DSA's initiative. It consisted of a conference (three days) and a seminar (two weeks) which were led by world-renowned experts from Australia, the USA and Ireland. The project was financed by the Russian Ministries of Education and Social Welfare, the International Women Club ("Action for Russia's Children"), and Australian organisations.
On July 8-13, 1996 a DSA delegation participated in the Tenth International Congress on Mental Handicap in Helsinki. The trip was financed by the Finnish Society of Parents with Disabled Children.
In October 1996 M. Tsarkova, the DSA vice-president, spoke at the International Congress on Down's Syndrome in Rome. Her trip was financed by the Italian Down's Syndrome Association and Women's Club of the Italian Embassy in Moscow.
In July 1997 DSA and the Committee on Public Health of the Moscow government held a meeting with the heads of Moscow medical districts on preventing babies from being left by their parents. During this meeting more that 1000 booklets on Down's syndrome were submitted for distribution among Moscow maternity hospitals.
On September 29 - October 1, 1997 DSA and the Russian Ministry of Education held an educational seminar on the Down's syndrome in Krasnoyarsk, Siberia. The seminar was called Education, Social Rehabilitation and Adaptation of Children with Down's Syndrome.
In October 1997 DSA took part in the Sixth World Congress on Down's Syndrome When dreams come true in Madrid. The congress was held under the patronage of the Queen of Spain Sophia. DSA demonstrated some results of its work. The DSA's video "Magic flute" about the Arts Centre for adults with Down's syndrome was included in the official program of the congress and was a great success.
On the All-Russian exhibition School-98 (February 26 - March 1, 1998) in Sokolniki DSA presented its exposition XXI Century - World without Unnecessary People. The musicians of the DSA's Arts Centre participated in the concert which took place on the opening day. This event was described in the Vechernyaya Moskva in its leading article Incurable talents. Unique concert in Sokolniki.
On March 20, 1998 the Committee on Public Health of Moscow government, Academy for postgraduate doctors' education, DSA and St. Claire Hospital from Rotterdam (Holland) held a conference What we can do to give a child a chance for better development and higher quality of life even if they have Down's syndrome or another form of handicap. Moscow doctors discussed medical aspects of the support system for mentally disabled children.
On April 15-16, 1998 the Russian Ministry of Education, Committee on Education of Moscow government and DSA together with the Bavarian Association of integrated kindergarten held the Russian-German conference Teaching babies and children of pre-school and elementary school age having Down's syndrome and other mental disabilities: early intervention, integration into ordinary kindergartens and elementary schools, rehabilitation in the Ministry of Education. The conference adopted an important resolution concerning rights of mentally disabled children to early intervention and education in integrated environment.
On April 17, 1998 an agreement on cooperation between DSA and the Russian Ministry of Education was signed. The agreement gives DSA the status of an adviser on Down's syndrome which allows DSA as a parents' organisation to influence government policy on education. This marked the fifth anniversary of our work, and we hope it will be a very fruitful development for Russian children with mental disability.
On May 4-7, 1998 DSA took part in the International Congress and Exhibition Education-98 in Sovintcenter. Sergey Koloskov made a report Person with Down's syndrome in modern world. Musicians of the DSA Arts Centre took part in a concert. Videos, dubbed and made by the DSA were included in the congress program. Work exhibited by the Association was awarded a diploma.

On May 15, 1998 the Russian Ministry of Education, DSA and Mental Disability Rights International (MDRI) held a Russian-American seminar and round table What is it - the rights of mentally disabled persons? International and Russian experience of defence of the rights of mentally disabled people. How to defence these rights. The event took place in the Russian Ministry of Education.

In 1999 the ¼ssociation participated in six exhibitions: the All-Russian Exhibition "School 99", exhibitions in the State and Moscow Dumas for hearings on "The Situation of Invalids", an exhibition in the Ministry of Education at a meeting on special education, a Moscow municipal exhibition of children's creative work, and at an exhibition for the international conference on "Developing the Russian Market in Paper and Card" (the latter was for fundraising).
We organised the visit of a Russian delegation to the IV European Down's Syndrome Congress Creative Challenge held in Malta from 10-13 March 1999, with the following aims:
* To promote the inclusion of Russia in the world movement to accept mentally handicapped people in society;
* Reforming the Russian system of helping mentally handicapped people.
The Russian delegation consisted of nine members representing the Association and both government and university institutions. The delegation was financed by UNICEF.

On 4 June 1999 together with the Ministry of Labour and Social Development and the Ministry of Education, and also Mental Disability Rights International with financial support from UNICEF a seminar was held under the title "Protecting the Rights of Mentally and Physically Handicapped Children. In premises made available by the Ministry of Labour and Social Development. There were about 50 participants representing social organisations of parents invalid children, and professionals.
The aims of the seminar were:

From 20th to 26th September 1999 Moscow held an International Week to Support Children with Mental Handicap from moderate to severe - the Second Moscow International Working Meeting entitled XXI Century: The WORLD OPEN FOR EVERYONE on the tenth anniversary of the UN Convention on Children's Rights, which is the most important law of the XX Century aimed at the defence of children's rights.
The Week was devoted to the problems of helping moderate to severely mentally handicapped children, drawing up legal norms to provide these children with the best conditions for these children to develop their personalities.
The meeting was organised by the Russian Ministry of Education, DSA (Moscow), the Russian Ministry of Labour and Social Development, the Russian Ministry of Healthcare, and Moscow Education Committee.
In preparing for the Week the Russian President's Administration requested heads of state executive bodies in constituents of the Russian Federation "...to provide assistance to education and healthcare departments to attend this meeting".
During the Week there were a three-day conference, six seminars and two roundtables, at the following organisations:
Moscow Mayor,
Russian Federation Council,
Postgraduate Academy for Educational Professionals,
Institute of Remedial Education at the Russian Academy of Education,
Russian Ministry of Education,
Kovcheg [Ark] school No.1321 (integrative).
More than 300 people attended the Week from 41 Russian regions, and from the Ukraine and Belarus, representing administrative bodies in the sphere of education, healthcare and social welfare, educational institutions, children's homes and vocational training centres under the Ministry of Labour, rehabilitation centres under the Ministry of Health, teacher training institutions, institutions of further vocational training, and parents' organisations.
The following leading international and foreign organisations dealing with mental handicap took part:

who were represented by leading scholars and professionals from the USA, Great Britain, Italy, Ireland, Germany, France and Belgium.
Participants familiarised themselves with the work of the Institute of Remedial Education at the Russian Academy of Education and Kovcheg, an integrative school in Moscow.
Over 90 lectures and talks were given on a diverse range of subjects:
preventing social orphanhood;
psychological and social support for families;
early intervention, integration into local kindergartens,
speech and language development, early teaching to read, preparation for school;
integration into local schools, individual programmes at school;
rehabilitation, individual rehabilitation programme;
the relations between mainstream and special schools;
teenage and sexual development problems;
preparation for independent living, vocational training;
supported employment, possibility of independent life in society, living as a couple;
leisure time, development and expression of creative abilities;
training of professionals;
reforming the system of "baby-homes" and "internats" so as to reintegrate mentally handicapped people into society: adoptive families, foster families;
medical and genetic research, mental health, prenatal diagnosis;
congenital heart disease in people with Down's syndrome and its treatment;
Down's syndrome and Alzheimer's disease;
Rights of mentally handicapped people;
public opinion and mentally handicapped people;
mass media and the problems of living in community;
participation of mentally handicapped people and their parents' organisations in decision-making at national and local level as it affects their lives;
relationship of mentally handicapped people and their parents' organisations and state authorities.

Talks given by foreign participants in the Week, and their discussions with Russian participants were interpreted. During the conference and seminar held in the Mayor's Hall English talks were simultaneously translated. The remaining seminars and round table discussions were consecutively translated from English and French.

In welcoming members to the Week, V. P. Shantsev, Moscow's Deputy Mayor stated: "Active cooperation between scholars, parents' associations and the state will enable us to provide the best conditions for personal development and solution to the problems of social integration of people with mental handicap."

Children with Down's Syndrome in Russia
Some figures

Until recently in Russia children with Down's syndrome were considered uneducable and unable to survival, just like it was in Western countries 30-50 years ago.
The majority of children with Down's Syndrome are given up by their parents immediately after birth owing to conservative medical and social views. The available data suggests that this is the fate of 50% of babies in the provinces and 90-95% in major towns.
Figures further show that 40% of such babies die within the first year of life, and that very small numbers indeed survive to adulthood.
According to the Moscow government data (1996) there were only 122 children with Down's syndrome aged between 5 and 18 in Moscow institutions, while with a total child population of 1,900,000 there should be - playing, learning, and enjoying life - from 1,500 to 2000 children with Down's syndrome of this age.

The Down's Syndrome Association calls on members of parliament and other politicians, civil servants and the community in Russia and abroad, and businessmen and women to begin an international cooperative endeavour to help the thousands of handicapped children in Russia.