OMNI-Net and Early Intervention

Nataliya Zymak-Zakutnya, M.D.
Head of Khmelnytsky OMNI-Center

During 1999-2005 in the course of the Ukrainian-American Birth Defects Prevention Program (UABDP) realization under the aegis of USAID powerful teams of specialists (neonatologists, geneticists, pediatricians, and information officers) were created in 5 oblasts of Ukraine. The teams were trained in birth defects (BD) diagnosis, early detection of mental retardation (MR) and developmental delays (DD), data collection and control according to the international standards.

Basic principle of conducting BD and Newborn registries is their logical and consecutive combining with early intervention (EI) programs, which requires a multidisciplinary approach.

Monitoring of more than 65,000 newborns shows that there are at least 5% of children with special health care needs (birth defects, mental retardation, developmental delays), who need stimulation of their development with the help of EI programs.

The binding element is a powerful web resource - "IBIS - International Birth Defects Information Systems" site (http://ibis-birthdefects.org/start/index.htm), the Ukrainian part of which is the second largest after the English one. The main task of this international resource is to spread knowledge about BD prevention among professionals and general public, accelerate the translation of scientific advances into clinical and public health applications and serve care providers in all regions in the world accenting on humanistic ideals.

In 2004 the USAID component of the Ukrainian-American Birth Defects Prevention Program was completed and assumed by the OMNI-Net. OMNI-Net is a not-for-profit international organization registered in Ukraine, the main task of which is development of resources for improvement of child care, birth defects and developmental delays prevention (http://ibis-birthdefects.org/start/netomni.htm).

Head of Supervisory Board is W. Wertelecki, M.D., FAAP, ACMG, Professor and Chairman of the Department of Medical Genetics of the University of South Alabama College of Medicine, Corresponding Member of the Ukrainian Academy of Sciences, Doctor Honoris-Causa of the "Kyiv-Mohyla Academy" University.

OMNI-Net unites 5 resource centers (RC) (Rivne, Lutsk, Kherson, Khmelnytsky, and Simferopol). Each RC offers access to the web, and other electronic and printed information resources. RCs, realizing their main tasks to conduct birth defects surveillance based on international standards, to provide informational support to medical specialists and BD children parents regarding medical genetics and child development, simultaneously perform considerable activities facilitating parental groups' creation (giving access to office equipment, internet, etc.). OMNI-Net helps parental organizations in establishing contacts with other similar organizations both in Ukraine and abroad. Newly created parental organizations have a possibility to post their activity information on Ukrainian part of IBIS - International Birth Defects Information Systems web site (http://ibis-birthdefects.org/start/downchar.htm), thus enlarging the number of their supporters and gaining new partners. Having received a possibility to communicate with parents from other countries, Ukrainian families become firm supporters of introduction of educational programs and EI methods; they come forward as initiators and catalysts of child developmental center creation in Ukraine.

Besides, another numerous group which benefits from EI is orphans, children deprived of parental guardianship, whose limited environment has a negative influence on their development.

ACTIVITIES

Rivne

In 2003, under support of US Embassy in Ukraine, in the frames of the project "Legal Support of Children with Disabilities" realization there was created the Rivne Oblast Association of Special Needs Children Parents. In partnership with the OMNI-Net, UABDP and under support of the local authorities the Association initiated creation of the Center of Early Educational Rehabilitation and Social Adaptation of Special Needs Children "Pahinets" (under the aegis of Department of Education of the Rivne Municipal Executive Committee). "Pahinets" is unique and the first state facility in Ukraine using contemporary methods of intellectual development early stimulation with active participation of parental organizations. The "Pahinets" staff includes a psychologist, teachers-rehabilitologists, and a speech therapist; it provides activities in such spheres as social and pedagogical patronage on an outpatient basis, work in adaptation and integration groups. Joint stay of healthy and special needs children contributes to a child development stimulation and is a step to the tolerant society, because it educates children as well as parents. There is a parental committee in the center, which includes active members of the Rivne Oblast Association of Special Needs Children Parents. Only joint efforts of parents and specialists as well as keeping the child in a family alow to achieve the best results in the child development. OMNI-Net provides continuous informational support to the Center. Health Care Department has provided medical care to children (pediatrician and geneticist supervision). Ukraine Special Needs Orphanage Fund has supported by lecotec equipment and educational materials. In 2006 together with OMNI-Net RCs it is planned to conduct a series of EI trainings for specialists and parents.

Scientific support to EI implementation is given by the Pre-School Pedagogics and Psychology Department of the Rivne State Humanitarian University and Psychology Department of the Volyn State University.

With the help of OMNI-Net there was initiated a student volunteer movement regarding early stimulation of intellectual development of special needs children. Students of Rivne, Lutsk, Kherson and Khmelnytsky medical colleges routinely attend children in orphanages in order to prevent attachment disorders.

Lutsk

In Lutsk parents addressed the state authorities initiating creation of Oblast Center of Early Intervention. The decision regarding the center opening was made on January 18, 2006. The persistency of parents in fighting for their own children's rights was increased by experience of Polish NGOs, contacts with which were established with the help of OMNI-Net. The peculiarity of the future center lies in its creation within the existing children's home. That will contribute to bringing modern EI technologies to orphans. Disinterested help to train the future center specialists was offered by experienced rehabilitologists from USA. Now active preparation work is held to conduct in September 2006 a training course on basic approaches to early rehabilitation of special needs children under the guidance of R. Lerer, M.D. Prof. R. Lerer is a member of the NGO "Caring Partners" Directors Committee; he was one of the pioneers of EI services in USA. This is another important partner involved by OMNI-Net into cooperation with Ukrainian specialists.

Khmelnytsky

In Khmelnytsky due to cooperation of the Ukrainian Social Investment Fund (USIF), Swedish International Development Agency (SIDA), local authorities and OMNI-Net there was started creation of the Informational Consultative Center for Families with BD Children, which will combine BD care and EI programs. It is planned to involve a multidisciplinary team of specialists (a developmental pediatrician, a medical geneticist, a psychologist, a social worker, and a lawyer).

Rivne, Kherson and FAS Research

Collaboration between the South California University and Kherson and Rivne RCs regarding prenatal FAS detection reveals another group of children, which needs access to the EI programs.

All the above demonstrates our approaches to the realization of a global idea in particular local conditions.

OMNI-Net continues supporting the Ukrainian part of the resource site "International Birth Defects Information Systems (IBIS)".

There was made an agreement to regularly publish selected IBIS informational resources regarding BD diagnosis, care and prevention in the popular Ukrainian medical newspaper "Medicus Amicus".

Due to the team-work of OMNI-Net members there were translated and published more than 10 manuals ("Growth Standards", "Birth Defects Book for Parents", "Birth Defects Book for Specialists", "Cystic Fibrosis", "Hydrocephaly", "Learning Difficulties", "Neural Tube Defects", "Fetal Alcohol Syndrome" etc.). There was translated, prepared for publishing and published the "Small Steps" Early Intervention Program (Macquarie University, Sydney, Australia) which is an essential resource for everyday activities in children's development centers.

Our Partners:

OMNI-Net has established contacts with some national and international partners providing further support and further development of the above-mentioned initiatives:

• University of South Alabama
• Ukraine Special Needs Orphanage Fund (Virginia, USA)
• Down Syndrome Ukrainian National Charity
• Children of Chornobyl Relief Fund
• Public Organization "Women for Future"
• Sister cities (Modesto, USA)

Perspectives:

Realization of one of the basic tasks of the International Children's OMNI-Net is development of EI resources, which requires active and efficient partnerships in Ukraine and worldwide.

For detailed information, please, contact:

W. Wertelecki, M.D. International Children's OMNI-Net Head of Supervisory Board 307 University Blvd. Room 214, CC/CB. University of South Alabama Department of Medical Genetics. Mobile, Al 36688-0002 USA Ph.: 1-800-624-1865 Fax: 251-461-1591 E-mail: wwertele@usouthal.edu

L. Yevtushok International Children's OMNI-Net Head of Executive Committee 36, 16 Lypnya St., Rivne, 33000, Ukraine Ph./fax: (38)-036-262-3447 E-mail: omni-rivne@bdp.rovno.ua

Date of report: February 6, 2006

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