Volyn Regional Public Organization of Parents of Children with Down Syndrome and Other Developmental Disorders

Olena Melnyk
Head of the Board

Volyn Regional Public Organization of Parents of Children with Down Syndrome and Other Developmental Disorders (Volyn NGO "Down Syndrome") was incorporated in October 2005. Our organization has united 30 parents of Down syndrome children, their families and specialists working with such children. That gives parents bringing up disabled children and specialists a possibility to share their experience and knowledge as well as to support each other in their not easy life.

Our aim is creation and implementation of programs directed at development of abilities and social skills of children with chromosomal and other pathology for their most possible integration into society as full rights Ukrainian citizens having equal rights in the community.

Special needs people and their families together with experienced specialists have a possibility to realize grant and state programs directed at early rehabilitation and social adaptation of such people in nowadays society.

Initiative group meeting

A little more than a year has passed since the Volyn NGO "Down Syndrome" official incorporation. This has been time of active work engaging people with disabilities, their families and specialists into public activities regarding their rights protection.

Our organization advocates realization of early intervention programs, concepts of integrated and inclusive education in general educational institutions provided by special teachers and individual correction activities. It also advocates psychological support of families having special needs children, creation of parental support groups, and improvement of social services quality.

During the past year Volyn NGO "Down Syndrome" performed considerable organizational work regarding the NGO development, establishing collaboration with non-government organizations both national and international. We collaborate with such organizations as Volyn Children's Public Organization "Child Development Center", Volyn Association of Disabled Children "A Special Child", International Children's OMNI-Net Not-For-Profit Organization, Down Syndrome Ukrainian National Charity, Rivne Association of Special Needs Children, Russian NGO "Down-Side-Up", Polish organizations "Bardzei Kochani" (Warsaw) and "Za Godne Zycie" (Chelm), Czech organization "Down Syndrome Children Family Club", Ukrainian Special Needs Orphanages Fund (Virginia, USA).

2005-2006 activities:

A flyer about Volyn NGO "Down Syndrome" was prepared, published and distributed.
Participation in the international conference dedicated to the problems of Down syndrome children, acquaintance with the Warsaw Early Rehabilitation (March 2005, Warsaw, Poland).
Participation in the Forum of Family Integration (May 2005, Chelm, Poland).
Meeting with representatives of the Ukrainian Special Needs Orphanages Fund (Virginia, USA), creation of the library of methodical literature for parents and specialists with their help (July 2005, Lutsk, Ukraine).
	Celebrating the New Year
Representing interests of disabled children and their families in government bodies - appealing to the Regional Health Care Department with an initiative of an early rehabilitation center opening in Lutsk (September 2005); the center was open in 2006.
Participation in the international conference "Developing Social Activities of Disabled Youth - Help and Innovations", acquaintance with the experience of the Polish NGO "Za Godne Zycie" (December 2005, Chelm, Poland).
Participation in the Volyn Regional State Administration workshop regarding rehabilitation of disabled children. We made proposals concerning their rehabilitation (December 2005, Lutsk, Ukraine).
Recreation and entertainment organization - The New Year celebration by Down syndrome children and their parents (December 2005).
Participation in the international conference "Contemporary Approaches to Integration and Socialization of Special Needs Children" (January 2006, Lutsk, Ukraine).
General meeting of our organization members - greeting mothers with the March 8-th holiday (March 2006, Lutsk, Ukraine).
Participation in the early intervention seminar organized by the Ukrainian Special Needs Orphanages Fund from Virginia, USA (June 2006, Rivne, Ukraine).
Organization and participation (together with the OMNI-Net and the Volyn State University) in the Scientific-Practical Conference "Medical, Psychological and Educational Aspects of Managing Children with Special Needs" and special trainings conducted by US specialists (September 2006, Lutsk, Ukraine).
Participation in the OMNI-Net project of translation, publishing and presenting the program of early educational help to children with developmental disabilities "Small Steps" (September 2006).
Joining the Volyn NGO "Coalition for Protecting Invalid and Intellectually Disabled People" (October 2006).

International Conference "Contemporary Approaches to Integration
and Socialization of Special Needs Children"

Social services rendered: psychologist's consultations to parents of birth defects children; developmental games and methodical literature in the rehabilitation tools rental office; organizing professional education of youth with limited abilities; organizing recreation, sports and health improving activities; searching for, translating and distributing the information related to Down syndrome and other developmental disabilities; organizing trainings and educational seminars for parents; forming ideas and attitude of the society towards social problems through the mass media and round tables.

Projects being realized by the Volyn NGO "Down Syndrome":

June 2006 - May 2007 - Together with "A Special Child" Association we realize the European Commission project "Effective Socialization of Special Needs Youth in the Volyn Oblast".
Our project "Down Syndrome Children - Rehabilitation and Integration into Society" was supported with the help of Canadian Agency for International Development through the mediation of the World Bank. The project includes publishing a Down syndrome booklet and an early intervention flyer, conducting a training seminar for parents and specialists, holding the "Merry Starts" festival.
The project "Creation of Methodical Literature and Developmental Tools Basis for Holding Correctional Activities with Children Having Psycho-Physical Development Defects" is funded by the Charitable Foundation "Salus". Its realization has begun in December 2006.
Collaboration with the Chelm NGO "Za Godne Zycie" and Warsaw organization "Bardzei Kochani" in the field of experience exchange during the common conferences and meetings in Chelm (Poland), Warsaw (Poland) and Lutsk (Ukraine) is continued within the project "We are United by Disabilities". Its realization period was September-December 2006. The project was funded by the Polish Ministry of Foreign Affairs. Its aim was - support of young Ukrainian public organizations rendering social services to disabled people and their preparing to effective work. On October 23-24 in Chelm there was held the international conference "We are United by Disabilities - Transboundary Experience Exchange" continued by international trainings of NGO leaders on October 24-28. During the trainings we learned how to write grants and prepared 2 common projects. On November 28 - December 1 Polish trainers held preparatory seminars in Ukrainian NGOs. In December 15 leaders of Ukrainian NGOs had their practice in 3 Polish organizations.
This year 2 more projects were supported by Regional and City Family and Youth Departments. They are: "Development of Psychological and Educational Rehabilitation Services for Children with Developmental Disabilities and Their Families" and "Parents and Children - Studying and Resting Together". These projects are also directed at early rehabilitation of children - developmental activities with a speech therapist and psychologist, activities related to drawing, modelling, applique' work, hypotherapy, family recreation.

"We are United by Disabilities" Project

Experience says that common efforts of parents is the force that can promote progress in social adaptation of children with developmental disabilities.

If a Down syndrome child was born in your or your friends' family, we can tell you about such people, their lives, successes and problems.

We hope to collaborate with those who care about our children problems and wish to help.

Our address:

Volyn NGO "Down Syndrome"
22, Sobornosti Prosp, Apt. 75, Lutsk 43000 Ukraine.
Ph: (+38) 0332-75-71-25 - Olena Melnyk
(E-mail - olena_melnyk@ukr.net)

Bank account:

#260013012515 in Volyn Regional Department
of State Savings Bank of Ukraine "Oshchadbank", MFO 303398,
ZKPO 09303328, Identification Number 33845638.

Date of report: March 28, 2007

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