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  • 1. EMILY VARGAS-BARÓN & ULF JANSONwith NATALIA MUFELEARLY CHILDHOOD INTERVENTION,SPECIAL EDUCATION AND INCLUSIONFOCUS ON BELARUS
  • 2. UNICEF Regional Office for CEE/CIS Emily Vargas-Barón & Ulf Janson with Natalia Mufel Early Childhood Intervention,Special Education and Inclusion: A Focus on Belarus Minsk «Altiora – Live Colours» 2009 I
  • 3. UDC 376.1(476)(047.1) Emily Vargas-Barón Director The RISE Institute Washington, DC, USA E-Mail: vargasbaron@hotmail.com Ulf Janson Professor Department of Education Stockholm University, Sweden E-Mail: janson@ped.su.se Natalia Mufel Early Childhood Development Specialist at UNICEF – Belarus Country Office E-Mail: nmufel@unicef.org currently – UNICEF, Cambodia For further information, please contact: Deepa Grover Regional Advisor Early Childhood Development UNICEF Regional Office for Central and Eastern Europe and the Commonwealth of Independent States E-Mail: degrover@unicef.org The opinions expressed in this document do not necessarily reflect the policies or views of the United Nations Children’s Fund. The designations employed and the presentation of the material (including maps) do not imply on the part of UNICEF the expression of any opinion whatsoever concerning the legal status of any country or territory, or of its authorities or the delimitations of its frontiers. Photographs: Alexander Konotop Typeset and layout: Dzianis Puhach Proof reader: Dzianis Stulov ISBN 978-985-6831-35-8 © Unicef, Regional office for CEE/CIS, 2009II
  • 4. The Project on child development, preschool and school inclusion, and support to childrenThis study reviews early childhood with special needs and their families. He is aintervention (ECI), special education and scientific counsellor to the National Board forinclusive education programmes in Belarus. Social Affairs, Sweden, on issues of childhoodUpon the request of UNICEF’s Regional Office disability, member of the Coordinatingfor CEE/CIS, it presents key programme Committee of International Society for Earlyconcepts and information, identifies lessons Intervention (ISEI), and member of the EU- andlearned, offers recommendations, and FIPSE-sponsored Transatlantic Consortium forpresents general Guidelines for ECI and Special Early Intervention. He has been a counsellorEducation Systems for the consideration of to the International Step-by-Step Associationother countries in the region and the world. (ISSA) and he collaborates with the Department of Psychology at St. PetersburgThe Authors State University and the Early Intervention Institute, St. Petersburg, in research andEmily Vargas-Barón directs the Institute for development of preschool inclusion.Reconstruction and International Security Publications in non-Scandinavian languagesthrough Education (The RISE Institute), include, except for scientific articles andWashington, D.C. and Bogotá, Colombia. reports, contributions to Brambring & RauhShe conducts research projects, advisory (Eds): Early Childhood Intervention, Research,services and training in integrated ECD and Theory and Practice (1995) and Kreuzer &education. From 1994 to 2001, she was a Ytterhus (Eds): Dabei sein ist nicht alles. SozialeUSAID Deputy Assistant Administrator and Inklusion und Marginalisierung in integrativendirected USAID’s Center for Human Capacity Gruppen der Kindertagesstätte (in press).Development. Previously, she foundedand directed the Center for Development, Natalia Mufel received her diploma inEducation and Nutrition (CEDEN, now called Psychology from the European Humanities“Any Baby Can”), an ECI and ECD programme University in the Republic of Belarus. Herserving families living in poverty in the U.S. studies include: postgraduate courses inShe also served as an Education Advisor for Belarusian State University (Psychology);The Ford Foundation’s Andean Region and as Belarusian Post Diploma Medical Academya UNESCO Education Specialist. She has been (Psychotherapy of Children and Adolescents);a professor at the University of Washington, Eastern-European Gestalt-Institute; andUniversity of Texas, Javeriana University, and Moscow Institute of Psychotherapy. She hasSorbonne University. She holds a Ph.D. in experience as a researcher, psychologist,Anthropology from Stanford University. She and lecturer in psychology, gender, childis the author of many books and articles, development, reproductive health, familyincluding: Formative Evaluation of Parenting psychotherapy, and PTSD/crisis interventions.Programmes in Four Countries of the CEE/CIS She has worked with working severalRegion: Belarus, Bosnia & Herzegovina, Georgia multilateral, NGOs and governmentaland Kazakhstan, (2006 UNICEF) and Planning agencies. In UNICEF’s Belarus Office, she wasPolicies for Early Childhood Development: the ECD Specialist and Focal Point for Health,Guidelines for Action, published in English, Nutrition, Gender, Pre-school Education,French, Spanish and Russian (2005 UNICEF, Stress Management, P2D and MICS3. NataliaUNESCO and ADEA). is currently working as ECD Specialist in UNICEF’s Cambodia Country Office.Ulf Janson is a professor in Education atStockholm University, Sweden. He holds aPh.D. in Educational Psychology (Pedagogics)from that university. He conducts research III
  • 5. Dedicationand AcknowledgementsThis publication is We are grateful to Branislav Jekic, UNICEF • Larisa Nikolaevna Bogdanovich,dedicated to the Representative for Belarus, and to Natalia Chief Physician, Brest Regional Medical Mufel, UNICEF Early Childhood Development Rehabilitation Centre “Tonus” forchildren of Belarus Specialist, who arranged our site visits in children with psycho-neurologicaland to the Belarusian Belarus and St. Petersburg and contributed diseasesspecialists who help extensive information for this study. We • Tatyana Zhuk, Director, Brest Regionalthem achieve their also thank Deepa Grover, UNICEF Regional Developmental Centre of Specialpotential. Adviser for Early Childhood Development, Education who initiated this study, shared many • Irina Evgenievna Valitova, resources, and joined us in St. Petersburg. Head, Developmental Psychology Department of the Brest State Special gratitude to these leading Belarusian University and Russian professionals for their generous • Iryna Romualdovna Rumyanceva, help: Director, Kobrin Development Center of Special Education, “Alpha” • Galina Vladimirovna Molchanova, • Ludmila Mihailovna Sheveleva, Director of the Minsk Development Acting Chief Physician, Kobrin Centre for Special Education, in Children’s Polyclinic Correction and Development Training • Maria Ivanovna Samcevich, Head, and Rehabilitation Centre Medical Rehabilitation Department of • Victoria Vitalievna Troinich, Principal the Kobrin Children’s Polyclinic Inspector of the Special Education • Tatyana Fedorovna Avdeichuk, Chief Department of the Ministry of Physician, Brest Children’s Polyclinic #1 Education, Belarus • Oksana Evgenievna Trofimuk, • Alexander Nikolaevich Yakovlev, Director, Development Center of Chief Physician of the Minsk Medical Special Education “Veda”, Moskovskii Rehabilitation Centre for children with District of Brest psycho-neurological diseases • Elena V. Kozhevnikova, Director, St. • Svetlana Mihailovna Eremeiceva, Petersburg Early Intervention Institute Head of the Psychological Department • Natalia U. Baranova, Deputy Director of the Minsk Children-Adolescents in Education, St. Petersburg Early Psycho-neurological Dispensary, Chief Intervention Institute Psychologist of the Minsk Health Executive Committee Our warm thanks also to Sarah Klaus (OSF, • Elena Titova, Chair of the non- London, UK), Elena Kozhevnikova (EII, St. governmental organisation Belarusian Petersburg, Russian Federation), Deepa Association of Assistance to Children Grover, Jean Claude Legrand and Severine and Young People with Disabilities Jacomy Vite (UNICEF, RO CEE/CIS), for their • Olga Grigoirievna Avila, Chief, Early thoughtful comments and enriching inputs Intervention Centre in Minsk’s 19th that helped immensely to give final shape to Polyclinic this document. • Iryna Mihailovna Voitsehovich, Speech Therapist, Early Intervention Centre, 19th Polyclinic • Oktyabrina Veniaminovna Doronina, Psychologist, Early Intervention Centre, 19th Polyclinic • Alina Anatolievna Nichkasova, Psychologist, Early Intervention Centre, 19th PolyclinicIV
  • 6. Table of ContentsDedication and Acknowledgements .......................................................................IVTable of Contents .......................................................................................................VPreface.......................................................................................................................VIIExecutive Summary ............................................................................................... VIIIPart I: Introduction .................................................................................................... 1I.1 Early Childhood Intervention: an essential part of all early childhood systems ..................................................................................................... 3I.2 Objectives, limitations and scope of the study....................................................................... 4Part II: Definitions, Conceptual Approaches and Context....................................... 5II.1 General definitions and approaches to ECI............................................................................. 8 II.1.1 Child status..................................................................................................................... 8 II.1.2 Special education needs.............................................................................................. 8 II.1.3 Early childhood intervention...................................................................................... 9II.2 Children with developmental delays or disabilities...........................................................10 II.2.1 Global rates of developmental delay and disability...........................................10 II.2.2 Services for children with special needs in CEE/CIS Region..............................11 II.2.3 Delay and disability in Belarus.................................................................................13II.3 Continuum of early childhood services.................................................................................15II.4 Defectology and special education.........................................................................................16II.5 Inclusion issues...............................................................................................................................19II.6 Continua regarding conceptual approaches to ECI...........................................................22Part III: The Belarusian Support System for Families with Special Needs Children....................................................................... 25III.1 Overview of the system for ECI, special and inclusive education................................27III.2 Introduction to health, medical and education services................................................30III.3 Polyclinic-based Early Childhood Intervention Centres..................................................32 III.3.1 ECI Centre at Polyclinic 19, Minsk...........................................................................32 III.3.2 Polyclinic ECI Centre, Kobrin....................................................................................34III.4 Child and Adolescent Psycho-neurological Dispensaries..............................................37 III.4.1 Psycho-neurological Dispensary, Minsk...............................................................37III.5 Medical Rehabilitation Centres, MOH....................................................................................39 III.5.1 Medical Rehabilitation Centre, Minsk...................................................................39 III.5.2 Medical Rehabilitation Centre, Brest’s “Tonus Centre”......................................39III.6 Development Centres, MOE......................................................................................................42 III.6.1 Development Centre, Minsk....................................................................................43 III.6.2 Development Centre, Kobrin’s Alpha Centre.......................................................44 III.6.3 Development Centre, Brest......................................................................................45III.7 Infant Homes..................................................................................................................................47III.8 Preschools for children with special needs, MOE..............................................................49III.9 Belarusian Association of Assistance to Children and Young People with Disabilities.................................................................................................52 V
  • 7. Part IV: Lessons from Belarus and Recommendations.......................................... 55 IV.1 Main triggers and drivers of the ECI and Special Education System..........................57 IV.2 Lessons learned and recommendations for Belarus........................................................59 IV.3 Recommendations for training, exchange and networking.........................................66 Part V: Guidelines for Establishing ECI Services .................................................... 69 V.1 Introduction.....................................................................................................................................71 V.2 ECI Guidelines..................................................................................................................................72 V.2.1 Basic principles............................................................................................................72 V.2.2 Range of services.........................................................................................................72 V.3 Guidelines Chart.............................................................................................................................74 Bibliography............................................................................................................................................79 Annexes..................................................................................................................... 85 Annex I List of Acronyms..........................................................................................................85 Annex II Official Belarusian ECI Documents: Main Inter-agency Agreements, Regulations and Guidelines.........................................................86 Annex III Map of the Republic of Belarus and Main Indicators and Locations Visited by the Researchers..................................................................87VI
  • 8. PrefaceVulnerable children require early are presented in Part V. We look forwardchildhood development (ECD) services to receiving your comments on theseto help them achieve their potential. suggestions.However, ECD programmes in manyworld areas aimed at serving vulnerable Because this review deals with manychildren tend to be short in duration complex and sensitive issues, UNICEF feltand they have general contents that are it was appropriate to create a two-personmore appropriate for typically developing study team that united our experienceschildren. Abundant research has shown with ECD and ECI systems in Europe,that effective services for vulnerable, high- Russia, Eastern Europe, the United Statesrisk, developmentally delayed or disabled and Latin America. With respect tochildren should be more intensive, study methodology, we conducted anenriched and longer in duration. extensive desk review of many studies and documents, systematic observationsProviding intensive and enriched of programme services in action whereverservices for vulnerable young children possible, and probing interviews ofis sometimes considered to be overly many parents, programme directors andexpensive. After significant experience, personnel. We crosschecked informationwe believe this to be untrue. New types extensively with a variety of sources toof Early Childhood Intervention (ECI) ensure the greatest accuracy possible.programmes for vulnerable children UNICEF personnel, and most especiallycan be designed with varying levels of Natalia Mufel, provided extensiveintensity and richer curricula, learning information about the evolving ECImaterials and methods. In addition, system in Belarus.better community outreach and childassessment systems are needed to On a personal level, it was very rewardingidentify children with high-risk status, to work together and share ideas. Wedevelopmental delays, malnutrition or hope our readers will agree.disabilities. Improved and expandedpre- and in-service staff training and Emily Vargas-Baróncombined supervisory, monitoring and Ulf Jansonand evaluation systems are required tosupport programme development overtime.As we shall show in this study,investments in ECI, special educationand rehabilitation services are lesscostly than institutionalising children,and in addition, they are far morehumane, effective, child-centred andfamily-focused.Because most countries in the CEE/CISregion have large health and educationsystems, we believe they are poisedto develop ECI, special education andinclusive preschool services. To enter thisnext stage of programme developmentfor young children, we encouragereaders to review the initial Guidelinesfor Early Childhood Intervention that VII
  • 9. ExecutiveSummary Early Childhood Intervention, Special delays, malnutrition, chronic ill health or Education and Inclusion: A Focus on disabilities. Belarus describes and analyses a variety of To assess the wide variety of services for programmes for vulnerable children with vulnerable children in Belarus, the authors developmental delays and disabilities. created a heuristic device: “Continua regarding Conceptual Approaches to ECI” This study documents the evolution of that is presented in Section II.6. In Part services for Early Childhood Intervention III, these continua were used to assess (ECI), special education, and rehabilitation prevailing special health, medical and for Belarusian children with special education services for young children needs from birth to six or eight years in Belarus. These assessments revealed of age. It includes definitions of key that a wide range of approaches is still terms, including: developmental delays used and further evaluation research is and disabilities; ECI services; special required to assess programme outcomes. education; defectology; and “child- centred,” “family-focused,” and inclusive In Part III, Chart III.1 Services for Special services. It reviews the nature of services Needs Children in Belarus presents a before the introduction of child-centred schematic overview of Belarus’ large and and family focused approaches in recent impressive system of health, medical and years, and it identifies some of the triggers education services. It then describes and that prompted the modernisation of analyses the country’s main programmes services as well as drivers that sustain for children with special needs, including: programme quality and continuous • Polyclinic-based Early Child- service improvement. The study focuses hood Intervention Centres; on these programmes’ normative, • Child and Adolescent Psycho- institutional and juridical status; structure neurological Dispensaries; and organisation; general service • Medical Rehabilitation Centres; coverage; and programme contents • Infant Homes; and approaches. In addition, the • Development Centres of the study provides some lessons learned, Ministry of Education; recommendations for the CEE/CIS region, • A wide range of preschools for and guidelines for ECI services. children with special needs; and Quandaries regarding prevailing • Family services of the Belarusian global, regional and national rates of Association of Assistance to developmental delay and disability are Children and Young People also discussed. The current status of with Disabilities. services for vulnerable children in the CEE/CIS region is also reviewed, along In Part IV, a series of triggers and drivers of with trends for moving from placement in the ECI and Special Education System are state care institutions to providing child- identified. Major lessons learned gleaned centred and family focused services for from this review of Belarusian services special needs children and their parents. for young children with special needs include: In section II.3, a Continuum of Early 1. Strong policy support, a legal Childhood Services is advanced as a basis for the ECI system, and conceptual framework regarding ways inter-sectoral agreements and countries can provide universal support guidelines promote the devel- for families with young children as well as opment of sustainable, cultur- more intensive and enriched services for ally appropriate, comprehen- children with risk status, developmental sive and continuous ECI serv- ices.VIII
  • 10. 2. Former defectological systems, preventive and supportive concepts and methodologies child-centred and family- should be revised to ensure based services for families an effective special education with special needs children. and health system can be The costs related to infant developed. homes and orphanages3. Service eligibility criteria should be progressively should remain broad. shifted to the ECI and Special4. Outreach services are essential Education System along with to identify and serve all special the provision of high-quality needs children. parent education and support5. Inter-agency early identifica- services to ensure children tion, assessment, case manage- will be well cared for and ment, tracking and follow-up nurtured. Care must also be systems are needed to ensure taken to ensure the transition children are not “lost” in the is well programmed to provide system. quality care in residential6. Individualised family and child environments as children are service plans should include gradually transitioned to new the informed consent and foster homes or are adopted. active participation of parents 17. In addition to current insti- in all programme activities. tutional monitoring require-7. Comprehensive centre- and ments, ECI services should home-based ECI services design and implement results- should feature the full range based programme evaluation of service intensities plus systems in order to assess pro- child care and respite care, as gramme outcomes. needed. 18. Strategies for ECI programme8. Year-round ECI services are advocacy are needed. essential given continuous 19. In addition to public sector child and family support needs. services, it is essential to9. Belarusian parent education, provide support for NGOs, counselling and support universities, professional services have proven to be associations and other civil effective and highly used by society organisations. the parents of special needs 20. Basic research is needed on children. child status, ECI systems and10. Parent involvement in policy impacts. ECI services and centres is correlated with client In addition, recommendations are satisfaction. provided for regional training, exchange11. ECI’s Interdisciplinary Teams and networking in order to promote helped to achieve well- the development of ECI services, special integrated services. education programmes, and inclusive12. Guidelines are needed to preschools in other countries. manage ECI learning resources.13. Careful planning for the In Part V, Guidelines for Establishing transition of children and ECI Services are offered to help other parents from ECI services countries design rights-based, child- to inclusive preschools and centred, and family-focused ECI services. primary schools is essential. These Guidelines include core concepts14. Flexible approaches should and basic principles, structures and ranges be used for pre- and in-service of services, processes and methodologies personnel training. for establishing effective ECI services. The15. Inter-agency coordination roles authors welcome comments on these and Commission meetings Guidelines. should be revised to ensure, among other matters, that parents are able to decide on the futures of their children.16. The cost of institutionalising children with developmental delays and disabilities far exceeds the cost of providing IX
  • 11. 12
  • 12. IPART :Introduction 1
  • 13. Part I IntroductionI.1 Early Childhood Intervention: an The incidence of developmental delaysessential part of all early childhood and disabilities throughout the worldsystems is only beginning to be discovered. For example, in the highly developed countryProgrammes for early childhood of Chile, a nationwide assessment ofintervention (ECI), special education infant and child development revealedand inclusive education should be high levels of developmental delayan essential part of all national early in young children, especially amongchildhood systems. Every society has families living in poverty. For infants frommany vulnerable children with special one to 23 months of age, delays variedneeds. These needs may be due to in municipalities from 23% to 40%. Forpoor birth outcomes, war, poverty, children from 24 months to four yearsfamine, insufficient nurturing care, an of age, delays varied from 28% to 46%impoverished learning environment, (Molina 2006). In response to thesepoorly formed early relationships, alarming figures, Chile currently is placingdisease, chronic ill health, biological or a major emphasis upon developing ECIchemical contamination, child neglect, services and inclusive preschool andfamily genetics, domestic abuse, or the school education.institutionalisation of “social orphans”1and disabled children. Such vulnerable A series of studies on the rate of returnchildren require intensive ECI services on investment in ECD revealed thatthat provide individualised attention to returns range from US $2 to $17 per dollarmeet their special needs. invested (Heckman et al 2000 – 2006). Economists and national planners findBrain research has demonstrated that it is these research findings most compelling.imperative to provide supportive services As a result of these and other studies, onfor pregnant women and young children October 25, 2007, leading internationalfrom birth to age three. During this economists participating in the Consultaperiod, approximately 80% of the brain is de San Jose, identified ECD as the firstdeveloped (Shonkoff and Phillips 2000). and most effective investment amongMost countries focus early childhood 29 priority areas for improving publicservices for children from birth to age spending and policies in Latin Americathree narrowly on primary health care, and the Caribbean. According to theand only begin to invest in preschool outcome document:education at age three or four. The criticalperiod of pregnancy to age three has Top priority was given to Earlybeen given relatively less attention. To Childhood Development programs.date, most countries have not established These are interventions that improvecomprehensive early childhood systems the physical, intellectual and socialfor parent education, early stimulation2, development of children early in theirand integrated services to meet an life. The interventions range fromarray of child development needs, from growth monitoring, day care services,high-risk and mild conditions to severemalnutrition, developmental delays or 2 Parents and caregivers conduct earlydisabilities. childhood stimulation and development activities, beginning at birth, to optimize infants and children’s perceptual, physical, mental, language, and social and affective development. In this study, infant stimulation is used to cover the full1 Social orphans are children who are in range of infant and child development activities.state care and without parental care, but who have It includes nurturing relationships, strong mother/at least one living parent. child bonding, and the promotion of positive socio-emotional development. 3
  • 14. preschool activities, improved hygiene With respect to the scope of this study, Part and health services to parenting skills. II includes a brief review of definitions and Besides improving children’s welfare conceptual approaches to the fields of ECI, directly, the panel concluded these an overview of “defectology” in relation to programs create further benefits for special education and inclusive education family members, releasing women as well as a discussion of prevailing rates and older siblings to work outside the of children with special needs in the home or to further their own education. world, CEE/CIS region and Belarus. Part Evidence shows that the benefits are III provides an overview of the medical, substantially higher than the costs.3 health and educational systems and services provided for vulnerable children I.2 Objectives, limitations and scope in Belarus. In Part IV, some lessons learned of the study and recommendations are offered. Finally, Part V presents general guidelines The UNICEF Regional Office of CEE/ for the development of ECI services in the CIS established the following study CEE/CIS region and elsewhere. objectives: 1. To document the evolution of centres for ECI, development training and rehabilitation for young Belarusian children from zero to six or eight years of age with special needs, including: the nature of services before the introduction of “child and family friendly” approaches; triggers that prompted the modernisation of services; and drivers that sustain quality and continuous service improvement. 2. To characterise and assess ECI systems and services in Belarus with regard to: normative, institutional and juridical status; structure and organisation; general service coverage; and contents and approaches. 3. To develop general guidelines for the establishment of effective, rights-based, child-centred, and family-focused ECI services in the CEE/CIS region. Although these objectives were attained, this study has some limitations. We had very limited time for field work. Programme directors were universally present during our relatively short visits to each centre; in some sites professional personnel were on vacation, limiting opportunities to observe child, parental and professional interactions. Most materials were available in Belarusian or Russian, and key documents had to be translated for us. Several technical terms and types of specialists were substantially different from those used in other countries. As a result, some terms have been translated using rough equivalents in English. 3 See website for additional information: http://www.iadb.org/res/ consultaSanJose/files/outcome_eng.pdf4
  • 15. PART II:Definitions, Conceptual Approachesand Context 5
  • 16. Part II Definitions, Conceptual Approaches and ContextIn 2007, UNICEF established new children with more complex disabilityprogramme guidance regarding Children appropriately.” (p. 9)with Disabilities: Ending Discrimination Part II addresses definitions andand Promoting Participation, Development conceptual approaches used to assessand Inclusion. This guidance provides a and identify children with developmentalframework for ensuring all children will delays, malnutrition and disabilities, andbe given an opportunity to develop their to provide child-centred and family-potential. It states: focused services. It also discusses “Programming can incorporate global, regional and Belarusian rates of attention to the issues raised by vulnerable children as well as reviews childhood disability in different ways programme approaches developed in across the life cycle. In the early years, CEE/CIS countries. Part II also presents early detection and intervention, a general continuum of early childhood as well as family support come to services and discusses issues regarding the fore. Early intervention is critical defectology, special education and and holds tremendous potential for inclusion. success. It requires high awareness among health professionals, parents, teachers as well as other professionals working with children. Family- and community-based early intervention services should be linked up with early learning programmes and pre-schools, which meet the needs of children with disabilities and facilitate their smooth transition to school. (p. 7) “Efforts to incorporate attention to children with disabilities in UNICEF health and nutrition programming should focus on improving strategies for early detection, referral and intervention and promoting equal access to health services.” … “As seen in numerous community-based rehabilitation (CBR) programmes, early screening and simple community-based interventions by front-line workers have shown to be an effective tool for improving the lives and functioning of persons with a disability... However, early screening and diagnosis must be linked to the provision of timely and appropriate support and advice to families, combined with the design and orientation of a corresponding intervention plan for more complex problems and for developmental delays. Efforts should focus on building the capacity of health workers and others in the community to provide advice and assistance to parents, as well as to refer 7
  • 17. II.1General definitionsand approaches to ECI Definitions and conceptual approaches Children develop in a holistic manner are essential to understanding the fields and evolve dynamically over time of ECI, special education and inclusive in response to their environments.4 education. The status of children targeted Because of this, both typically developing by these programmes is a complex topic. children and those with developmental They include children at high risk of delays or disabilities require balanced developing delays or disabilities, children support in all areas of development, that have developmental delays, and including perceptual, fine and gross children with disabilities. motor, language, cognitive and social/ emotional development as well as II.1.1 Child status health and nutrition in order to achieve their innate potential. To achieve Children who are at risk of developing balanced development, early childhood delays and disabilities include those programmes use integrated approaches with poor birth outcomes, biological that include basic services for preventive or genetic risks, or whose parents live health care, nutrition, early nurturing, in poverty, have low levels of formal stimulation and child development education, or suffer from domestic activities, home and community violence, substance abuse, violent sanitation, and in cases of special need, conflicts, famine, diseases, poor sanitation juridical protection and protective or other negative situations. services. A child is considered to have a II.1.2 Special education needs developmental delay when he or she is assessed to have atypical behaviour Special education can be defined as or does not meet expected normal educational and social services provided development for actual or adjusted by preschools, schools and other age in one or more of the following educational organisations to children areas: perceptual, fine or gross motor, usually between the ages of two and social or emotional, adaptive, language one-half or three years of age to 18 to and communication, or cognitive 21 years of age. ECI services usually development. A delay is measured begin before special education services by using validated developmental are provided but in some countries, ECI assessments. The delay may be mild, programmes are included within special moderate or severe. Poor birth outcomes, education services, as is the case in inadequate stimulatio and nurturing care Belarus. from birth onward, organic problems, psychological and familial situations, or The OECD classification of children with environmental factors can cause delays. special education needs is as follows: Cross-national category “A/Disabilities”: A child is considered to be disabled if Students with disabilities or impairments he or she has a physical, health, sensory, are viewed in medical terms as organic psychological, intellectual or mental disorders attributable to organic health condition or impairment that pathologies (e.g. in relation to sensory, restricts functioning in one or more areas, motor or neurological defects). The such as physical movement, cognitive educational need is considered to arise and sensory functions, self-care, memory, primarily from problems attributable to self-control, learning, or relating to these disabilities. others. Many national and international 4 Holistic development refers to integrated typologies of disabilities list impairments and balanced development in all areas, including by type. physical, social, emotional, language and cognitive development.8
  • 18. Cross-national category “B/Difficulties”: medical, nursing and nutritionalStudents have behavioural or emotional services; and parent education anddisorders, or specific difficulties in support services, including referrals andlearning. The educational need is protective services, if required. They seekconsidered to arise primarily from to identify high-risk, developmentallyproblems in the interaction between the delayed, and disabled children at or soonstudent and the educational context. In after birth or the onset of special needs.the survey of special educational needs They also identify delays that appearprovision among member countries for later due to situations such as poverty,school year 2000/2001, “mild mental lack of early nurturing and stimulation,handicap” was changed from category B malnutrition, chronic ill health, war, lossto category A. (OECD 2005, pp. 14 and 26) of parents, neglect, abuse, child labour, and so forth. By focusing on children’sCross-national category “C/Disadvan- environments, ECI services help removetages”: Students have disadvantages aris- barriers to development in terms ofing primarily from socio-economic, cul- social and educational conditions as welltural and/or linguistic factors. The educa- as environmental adaptation and thetional need is to compensate for the dis- provision of technical aids.advantages attributable to these factors. An additional ECI definition describes theAlthough widely used, the OECD range of potential programme servicesclassification for children with special and impacts. For example, Shonkoff andneeds focuses on disability rather than Meisels state:ability. It does not include learning “Early childhood intervention consistsopportunities from the removal of of multidisciplinary services providedbarriers or achievements that can result to children from birth to 5 years of agefrom giving each child positive support to promote child health and well-being,for attaining his or her potential. The enhance emerging competencies, minimizeearly childhood intervention approach, developmental delays, remediate existingpresented next, stands in stark contrast or emerging disabilities, prevent functionalto this classification’s focus on disability. deterioration, and promote adaptive parenting and overall family functioning.II.1.3 Early childhood intervention These goals are accomplished by providing individualized developmental, educationalMichael Guralnick defines early and therapeutic services for children inchildhood intervention “…as a system conjunction with mutually planned supportdesigned to support family patterns for their families.” (2000, pp. xvii-xviii) In essence, ECIof interaction that best promote child programmes providedevelopment” (2001). From the parents’ ECI services usually begin at or shortly a system of earlypoint of view, Texas ECI services are after birth, and depending upon need, childhood services anddescribed as follows: “Children grow and should continue until developmental support for:learn, or develop, a lot during their first three goals are achieved and consolidated, theyears. Although each child is special and child enters preschool or school, and/ 1) vulnerablegrows and learns at his or her own pace, or reaches six to eight years of age. The children at high risksome children need extra help. This extra length of time ECI services are provided for developmentalhelp is called early childhood intervention.” varies from country to country: from birth delays or with(Texas ECI Handbook 2006.) Shiela to three years of age, or from birth to confirmedWolfendale asserts that an ECI programme school entry or five to eight years of age. In developmentalhas several goals: “Firstly, it is provided to countries with strong inclusive preschool delays or disabilities,support families to support their children’s education programmes, ECI services often anddevelopment. Secondly, it is to promote focus mainly on the critically importantchildren’s development in key domains such period of birth to three years of age. 2) their parents andas communication or mobility. Thirdly, it is Where they exist, ECI services are usually families.to promote children’s coping confidence, provided to both parents/families and toand finally it is to prevent the emergence of children. For this reason, ECI services are The primary goal offuture problems.” (1997). universally family-focused and feature ECI programmes is parent empowerment, education and to support parents inECI programmes include an array of support. When ECI, special education helping their children tobalanced activities with infants and and inclusive services are joined together, use their competenciesyoung children to encourage their inclusive services may continue until they to achieve their fulldevelopment in different domains reach 18 years of age. developmental potentialthrough a variety of methods: physical, and attain expectedlanguage and occupational therapies; levels of development,special education and inclusive services; to the extent possible. 9
  • 19. II.2Children with developmentaldelays or disabilities II.2.1 Global rates of developmental both physical and socio-cultural at-risk delay and disability factors. Early childhood services are particularly important for such children, The global rate of developmental delay and contribute strongly to their health, and disability is not known. Some social and cognitive development, as estimate there may be 150 million well as to the social inclusion of their children with disabilities alone worldwide, families and their future participation indicating a prevalence rate of only in society. Moreover, these services fulfil 1.3%, which must be a vast undercount an early screening function in detecting (Committee on the Rights of the Child special needs which, if identified 2006). The World Bank estimated that sufficiently early, can be treated more 40 million of 115 million out-of-school effectively, including the provision of children have disabilities, including those support to families.” (Bennett 2006, p. with moderate disabilities, and at least 92). 25% of the world population is affected In Starting Strong II, OECD’s Education by disabilities. (World Bank 2003) The Directorate presents the following numbers of children, who are at risk of statistics for OECD member countries developmental delays or disabilities or using the categories presented earlier are already affected by them, vary greatly regarding the frequency of varying levels from country to country depending of risk, delay or impairment:5 upon: poverty rates; basic health care; birth outcomes; parental educational and Category A/Disabilities: These are economic levels and other circumstances. conditions that affect students from Many more children are affected by all social classes and occupations, developmental delays than originally generally around 5% of any OECD thought, as demonstrated by the Chilean population. national study of Dr. Helia Molina, noted above. However, many national planners Category B/Difficulties: These learn- believe that only a small percentage of ing disabilities are often temporary in children are affected by delays, such as nature, and afflict a small percentage – from 4% to 5%. This belief has been used around 1% – of any population. as an excuse for neglecting to budget adequate funds for essential health and Category C/Disadvantages: This education services for children with is a large group in many countries developmental delays or disabilities. ranging from 15% to 25% of children in any given urban population.” Regrettably, few countries have reliable (Paraphrased from Bennett 2006, pp. counts of children with high-risk status, 97 – 98)6 delays and disabilities. Starting Strong II states, 5 The OECD member states are: Australia, Efforts to improve equitable access Austria, Belgium, Canada, the Czech Republic, target primarily two categories of Denmark, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Japan, Korea, children: children with special needs Luxembourg, Mexico, the Netherlands, New due to physical, mental or sensory Zealand, Norway, Poland, Portugal, the Slovak disabilities; and children with Republic, Spain, Sweden, Switzerland, Turkey, the additional learning needs derived from United Kingdom and the United States. family dysfunction, socio-economic disadvantage, or from ethnic, cultural 6 For Category C, due to a relative lack of adequate health and education services, the rates or linguistic factors. In practice, many of developmental delay and disability in rural areas children in need of special or additional of OECD nations tend to be higher. educational support have accumulated10
  • 20. In some parts of the Soviet Union,Adding these rates together, from 21% to nursery care was less available; however,31% of young children in OECD countries young children were usually placed inare affected by/or at risk of developmental preschools in order to release mothersdelays or disabilities, a figure not totally to work outside the home. Infants anddissimilar to Molina’s findings in Chile. young children who were considered toThis high level of need for ECI services has have a “defect” or other disability wereenormous implications for educational sent away to institutions and they rarelyachievement, social service costs, and were able to leave them during theirnational productivity. lifetimes. Defectology was developed as a discipline for identifying and caringNational coverage of special and inclusive for these children (See Section II.4).education services that are enriched, Parent education was not provided,more intensive, and longer in duration has and State responsibility for child rearingbeen attained only in Australia, Europe, was emphasised while families wereNew Zealand, North America and a few given a lesser role as helpers of Statecountries of Latin America. These realities institutions. All of these circumstancesmake the achievements of Belarus, a led to a situation where many present-country in transition, all the more striking. day families do not esteem parenting andSimilar to many industrialised countries, lack basic parenting skills.Belarus has developed a large ECI andSpecial Education system. At the start of transition, several CEE/CIS countries experienced major economic It can no longer beII.2.2 Services for children with special and social dislocations and highly diverse sustained that ECIneeds in CEE/CIS region approaches to ECD arose, depending and special education upon historical, institutional, cultural, programmes wouldBefore the founding of the Soviet Union, religious and economic circumstances. serve only a smallRussia had developed a wide variety of However, a few general statements may percentage of a nation’spreschools. (For a rich discussion, see be made about the region as a whole. children in non-OECDTaratukhina et al 2007.) However, after the Poverty indices rose sharply and in many countries. To ensureOctober Revolution, private or otherwise countries, health, educational and social all children reachindependent preschools were ended services were severely curtailed, leading their developmentalor transferred to People’s Commissariat in most but not all countries, to a rapid potential, nations needof Education. Thereafter, State-funded deterioration in primary health care, to target services to fromprogrammes provided centre-based preschool education, and many other 30% to over 50% of eachcare for newborns and young children: social services upon which most families birth cohort. For nations1) to enable mothers to work after two had become dependent. In addition, to meet their humanmonths of rest after childbirth; and 2) with privatisation, where national and/ rights commitmentsto form children into citizens devoted or local governments did not mandate and become productiveto collectivist approaches wherein the maintenance of preschool services, and competitive inindividual creativity and initiative were coverage tended to decline precipitously. the world, it will benot fostered (Zafeirakou 2006). Since 2000, many of these countries are necessary for them recovering economically, and they are to establish policiesAs noted by Taratukhina, “…the Soviet rebuilding and reforming their services and cost-effectivesystem was quite effective in dealing with for young children and their families. programmes for ECI andthe tasks set by the State. It was: stable; In general in the region, programmes special education as corewithout competition; not arbitrary; settled for early childhood tend to have low elements of servicesand in keeping with Russian habits and coverage and be directed and managed for early childhood andmentality; a prop of the existing social by the public sector. In some cases parenting.system; the same for all 15 component there is collaboration with civil societyrepublics of the USSR; centralized; without organisations, such as the Step byright of initiative or independent decision Step NGOs established by the Sorosmaking; easy to manage from above Foundation Network, International Babybecause of its uniformity. From the mid- Food Action Network (IBFAN), and others.1980s (the beginning of perestroika) there Increasingly, NGOs, universities, instituteswas a gradual transfer from a unitary and private initiatives are playing keydenationalized education system to roles in ECD in many of the countries.a democratic, multiple and ethnically Residual pre-transition programmesorientated education system. Russia saw and newly developed ones tend to bethe revival and qualitative improvement clustered in urban centres. Most CEE/of national schools and the restoration of CIS countries are experiencing serioushumanist traditions in education. (p. 6) challenges in reaching rural areas and excluded ethnic and linguistic groups. The decentralisation of governmental 11
  • 21. services has revealed a lack of capacity Specifically, the figure rose from 500,000 at municipal and community levels for children at the time of transition to 1.5 comprehensive ECD planning, including million children officially designated to for ECI services. In general, as countries have disabilities in 27 countries. (UNICEF have not formulated ECD policies, 2005 p. 2) This increase may not be real plans, legislation, standards, evaluation, since it is surmised that countries have quality assurance and accountability become more adept in recent years at systems. Only a few countries have identifying and reporting disability. developed incipient ECI systems. In this, Belarus is leading the way through the In the former Soviet Union, most children establishment of its large, varied and with disabilities were institutionalised. quite integrated ECI and special education They were never seen, and if they were, system. they became the object of discrimination (Sammon 2001). Furthermore, when In CEE/CIS countries, until recently children with disabilities entered infancy to three was considered mainly preschools, they tended to be isolated the responsibility of parents and and received a poorer quality of education health care systems. There is growing and were unable to form social ties. When acknowledgement of the need to segregated into institutions, they rarely develop comprehensive ECD systems for were able to rejoin society during their parents and children starting from the lifetimes. The 2005 General Comment prenatal period. With respect to children Number 7 on the UN Convention on the over three years of age, in Central Asia, Rights of the Child states, “Early childhood preschool education declined after the is the period during which disabilities fall of the Soviet Union; however by are usually identified and the impact on 2004, the preschool gross enrolment rate children’s well-being and development had risen to 27%. In Central and Eastern recognized. Young children should never Europe, gross preschool enrolments also be institutionalized solely on the grounds of dropped but had recovered by 2004 disability. It is a priority to ensure that they with an average gross enrolment rate of have equal opportunities to participate fully 57% in the region, with great variation in education and community life, including among the countries. However, children by the removal of barriers that impede the from the poorest backgrounds who realisation of their rights. Young disabled stand to benefit most from ECD services children are entitled to appropriate tend to be most likely to be excluded specialist assistance, including support for from preschools. “Many children from their parents (or other caregivers). Disabled ethnic minority groups are mislabelled children should at all times be treated with as ‘developmentally delayed’ and lack dignity and in ways that encourage their access to essential services.” (Sammon self-reliance.” 2001, p. 9) Better family income, majority status, urban residency, higher maternal UNICEF estimates that about 1.5 million education levels, birth registration, and children in the CEE/CIS region live in the presence of an immunisation record, institutions and other out-of-home are associated with the likelihood of care arrangements, and of them, at preschool attendance in the region. least 317,000 had disabilities. These (UNESCO 2006, pp. 3-6) In South East institutionalised children tend to be either Europe, services for children from birth to disabled or among the most vulnerable, three and for preschool education tend and in most countries of the region, to be severely limited, especially for rural they usually lack access to ECD services and excluded groups. (Zafeirakou 2006) and quality preschool opportunities. A growing emphasis on social equity is Jonsson and Wiman estimate that in leading to new ECD initiatives, and to Eastern Europe, 60% of all children interest in developing ECI services in placed in institutions are disabled (2001, countries such as Bosnia and Herzegovina p. 9). The study by UNICEF’s Innocenti and Albania. Centre found that in the CEE/CIS, children with disabilities have an 18% chance of Countries of the CEE/CIS region use being institutionalised. Other typically different definitions of disability, and developing children have only a 0.39% systems for identifying children are chance of becoming institutionalised. not well developed in most countries. Overall, they estimate that a child with UNICEF’s Innocenti Centre estimated disabilities in CEE/CIS is 46 times more that there had been a threefold increase likely to be placed in an institution in children with disabilities between (UNICEF 2005). the start of the transition and 2005.12
  • 22. A study in the Russia Federation revealed institutes that continue to prepare health,that many children continue to be placed education and other professionals.in institutions because their communities Populations tend to have higher levelslack essential supportive services. They of formal education than many otherstated, “The health, education, and social world regions. The public health systemservices necessary to permit children to has been weakened but it is still intactremain in the community with their own in most CEE/CIS countries, and usuallyfamily or with substitute families are it has retained some home visiting andlacking. … The near exclusive reliance on polyclinic primary health care servicesinstitutional care for children who require that could be improved and expanded tosupport contributes to the disabilities of provide many ECI services. Although thechildren. Research in child development number of preschools initially declined,and the experience of other countries curricula and methods have been largelyaround the world has demonstrated that revised, and preschool services are beingchildren experience developmental delays expanded in most countries. Optionsand potentially irreversible psychological for avoiding institutionalisation aredamage by growing up in a congregate under consideration and new parentenvironment. This is particularly true in the support services are being institutedearliest stages of child development (birth in several countries. Vivid interest hasto age four), in which the child learns to been expressed in expanding inclusivemake psychological attachment to parents education and some inclusive preschools(or substitute parents). Even in a well- and schools are being developed.staffed institution, a child rarely gets the Countries are beginning to consideramount of attention he or she would receive developing ECD policies and plans, andfrom his or her own parents. Consequently, in many countries, they are taking an Poverty, familyinstitutionalisation precludes the kind of integrated and comprehensive view of problems, stigma, andindividual attachments that every child the early childhood field, including the a lack of informationneeds” (Rosenthal et al 1999). Indeed provision of ECI and inclusive services. and community-basedUNICEF found that most children with options lead parentsdisabilities in the region come from II.2.3 Delay and disability in Belarus to seek help frompoverty-stricken families. (UNICEF 2005, institutions.p. 2) Definitions of developmental delay and disability in Belarus differ from those In addition to highlyWith support from international generally used by OECD countries. The detrimental effects oforganisations including UNICEF, the Ministry of Education (MOE) reports that institutionalisation onWorld Bank, and the Open Society of the nearly 2 million children from child development,Institute, among others, countries in the birth to 18 years of age, 125,981 children institutional careregion are working to de-institutionalise (6.3% of all children) are affected by is far more costlychildren, and especially those with disabilities, and of them, approximately than community ECIdisabilities. (Tobis 2000) For example, 30,000 children (1.5% of all children) are programmes, inclusivein the Former Yugoslav Republic of considered to be severely delayed or preschools, andMacedonia, the Ministry of Labour and disabled. parenting services.Social Policy (MOLSP) is developing newpolicies and alternative care options Of the 125,981 children from birth tosuch as community-based services age 18 reported to have disabilities, theand day care centres. They are training following statistics are provided by thepersonnel, reuniting children with their MOE:families or placing them with carefully • Number of children identifiedscreened, selected and trained foster to have delays and disabilities,families and developing small group from birth to three years of age:homes where necessary (UNICEF 2007). 6,740In general, countries of the region are • Number of children, four to fivelooking for alternative, positive options to years of age: 33,943institutionalising children with disabilities • Total children birth to six years ofand other social orphans, and they are age: 40,683trying to go beyond the provision ofwelfare payments and disability pensions The total number of children from infancyfor children. (UNICEF 2005) to six years of age was reported to be 632,913 for 2006, with 40,683 identifiedFortunately, the CEE/CIS region has to have a disability, yielding a disabilitysignificant strengths upon which to build rate of 6.4% of the children less than sixits ECD and ECI services. Most of the years of age. This disability rate is virtuallycountries have retained strong institutions identical to that of the general populationof higher education and technical of children from birth to 18 years of age. 13
  • 23. This disability rate is slightly higher than Before transition, most children with the general rate of 5% for OECD countries. disabilities were separated from their families, placed in Infant Homes, and Of concern is the major difference later transferred to orphanages. Today between the numbers of children in Belarus, about 33,000 children are identified to have disabilities from birth orphans or denied parental care. Many to three years of age (6,740), in contrast of them have disabilities and do not have to those who are from four to six years contact to a stable family. They remain of age (33,943). Greatly expanded “invisible children” who are rarely seen attention needs to be given to home in everyday life. These children with and community outreach to identify all disabilities receive more developmental of the infants and toddlers who are high- services than before but they lack loving, risk, delayed or disabled. The MOE states stable parents. It was reported that many that, in collaboration with the Ministry infants become social orphans especially of Health (MOH), it serves virtually all because of the high 68% divorce rate. In identified children. 2006, there were 73,000 marriages but over 30,000 divorces. In Belarus there are With respect to the types of disabilities over 355,000 single parent families, and found in Belarus, the MOE reports the only 12,000 of these are father-headed following: families. Because of the high divorce • 74.5% have speech/language rate and related social issues such as delays substance abuse, family violence, and • 14.4% have “difficulties child abandonment, new family therapy learning” programmes are being developed • 13.8% have cognitive delays throughout Belarus. • 11.0% have physical disabilities • 5.0% have problems with In addition to family therapy, Belarus eyesight or blindness is expanding its ECI and rehabilitative • 1.6% have auditory challenges services, experimenting with special • 2.6% have motor delays7 education and inclusive approaches in crèches and preschools, and has This list totals 125%, indicating that developed a country-wide parenting some children have more than one education effort that is nested within all type of disability. However, usually health, medical and education services higher rates of multiple disabilities are that work with the parents of young encountered, so these figures may be a children. The strong and supportive large undercount. Also the proportion Positive Parenting Programme (PPP) of speech/language delays seems to be that was developed with support from extraordinarily large and cognitive delays UNICEF serves all programmes for young quite low, for they often go hand in hand. children in Belarus (Vargas-Barón 2006). Physical disabilities also seem to be low. To strengthen the PPP, the “Successful Although the MOE has made a major Childhood Development Centre” was effort to identify such children, additional officially inaugurated in 2007 with work is needed to identify and categorise strong official support. This resource disability. centre for the parenting programmes is located in the Belarusian State According to the 2005 Multiple Indicator University. A post-graduate university Cluster Surveys (MICS) for Belarus, 3.8% of programme is also envisaged to prepare children are born at or below 2,500 grams. early interventionists and upgrade This rate is low but all of these fragile other specialists. In addition to general children need special care to prevent parenting resources for specialists long-term delays or disabilities. Because and parents of typically developing of universal health service coverage, it children at low risk of developmental should be fairly easy to ensure all such delays, several books and booklets for children are promptly identified and parents of children with high-risk status, referred for ECI services. Malnutrition developmental delays or disabilities, have is rarely found in Belarus, and the MICS been developed, field-tested, produced identified less than 1% of children with and distributed. malnutrition. 7 A variety of assessment and screening instruments are used. A standardised system has not been established.14
  • 24. II.3 Continuum of early childhood servicesECI services represent the most intensive as soon as possible in order to avoidpole on a continuum of national-level the occurrence of serious delays. Manyearly childhood services. The following children with developmental delays thatmatrix refers especially to services for begin services at the most intensive endchildren from birth to 36 months of age. of the continuum move to moderatelyFor children with high-risk status at birth intensive services within 9 to 12 months,or potential developmental delays or and some will attain “normalcy” anddisabilities, it is essential that they enter then consolidate their gains throughECI types of services soon after birth. participating in the least intensive servicesOther children are identified after birth, listed at the right end of the continuum. Chart II.1: Continuum ofand they should be assessed and served Early Childhood Services Service Intensity Most intensive Moderately intensive Least intensive ECI + parent education & Focused ECI/ECD services + ECD services + parent educa- Services Type of services support parent education & support tion & support, as needed High risk of developmental Level of risk Moderate risk of delay Low or no risk of delay delay Very high risk of delay, in- Improved, mild delay, or only No delay or low to no risk of Degree of delay cipient to severely delayed at risk of delay delay Disabled or at high risk of Child Status Degree of disability Mild or no disability No disability risk disability Moderate to severe Mild malnutrition, Nutritional status* Normal nutrition malnutrition consolidating gains Severe or chronic disease Improved health but still at Preventive & basic health Health status or illness risk status & care Intensive, frequent child & Regular, less frequent child & Annual child & family Assessments family assessments family assessments assessments Home & centre-based Centre-based, with fewer Service locations Centre-based services only services home visits Frequent visits or sessions Less frequent (biweekly, Sessions upon request, Service frequency (daily to weekly) monthly) usually centre-based Service Continuous services of Duration dependent on need Shorter, episodic & upon Service duration Aspects long duration & improvement request Moderate (45 minutes to 1 Short, vary with parental Length of sessions Longer (1 to 2 hours+) hour) request Early interventionists, ther- Early interventionists, supervi- Early childhood home visitors Service providers apists, nurses, physicians sion from therapists, others & parent educators, others Roles of para- Assistants, home visitors, Assistants, home visitors, Supervised assistants professionals supervised by specialists supervised by specialists & parent educators* WHO standards for nutrition will be followed. 15
  • 25. II.4Defectologyand special education Within the framework of intensive early child. It also employs other diagnostic childhood services, during the 1920s, and nosological labels, which in the ECI- the field of defectology, with Vygotsky8 perspective of today, are considered to be as its pioneer, was established in the degrading, like “oligophren,” “moron” and Soviet Union as a special discipline so on. dealing with impairments, disabilities and developmental delays. Although The deficit approach is logically related Vygotsky was a precursor of modern to the orientation of goals for service special needs education, his early writings provision and intervention, which is on defectology were not followed. summarised in the term “correction.” Later on, in its treatment applications, Diagnosis points to what is wrong, deviant defectology developed into a correctional from normality, and the consequent and socially segregating system. Children next step is to attempt to correct this with delays or disabilities were closeted deviance. Correction is considered to be away, and few rejoined society and a matter of treatment, training, therapy their families (Rosenthal et al 1999). or compensation, and it is believed To grasp the specific character of the that highly experienced and skilled defectological orientation, in comparison professionals are required to accomplish to the normative orientation underlying this treatment. Since this is considered to the ECI perspective, it is important to pay be the case, laypersons are not generally attention to conceptions held regarding seen as resources or as horizontally related the child, service objectives, and key partners in intervention and support. principles for the organisation and Parents are – at the most – receivers of provision of services. prescriptions of regimes. Other children are seldom seen as potential resources In its conception of the child, defectology within the treatment plan. Inclusion, if is oriented to deficits, rather than at all considered, is consequently judged competencies. Assessment is considered from the perspective of treatment to be solely a diagnostic procedure and training: if it leads to comparable aiming at identifying deviances from correction outcomes it might be seen what is assumed to be normal. The cause as an option. (In the case of preschool of a special need, as well as eligibility for and school inclusion, such an outcome, support, is thought of as a “pathology,” however, is rarely considered, because in terms of physical, mental, sometimes special support is, with few exceptions, also moral development, and the child not given within the mainstream school is consequently conceived of as an context.). “invalid.“ This can be contrasted with the never ending, and sometimes ridiculed, Defectological service provision is discourse about the “correct” way of organised as a highly specialised service, terming a situation where the individual and it is usually centre or institution child has a need for special support in bound. Identification of needs was, in development, health, learning, social the early years, a task for regular medical participation or whatever. While the health controls. ambition, reflected in this discourse, is to identify and understand disabling or restrictive circumstances and barriers, and concentrate efforts on removing them, the defectological perspective frequently uses the term ‘invalid’ to characterise the 8 Collected Works of L. S. Vygotsky, Vol II: Fundamentals of Defectology (Abnormal Psychology and Learning Disabilities). Kluwer 1993).16
  • 26. When “disorders” considered as severe9 CIS countries, is not always put fully intowere identified, the defectological practice as described above. Sometimessystem routinely advised parents to it is used just to designate certainplace the child in residential care. For professions (‘defectologists’), like specialpreschool enrolment, children with education teachers, speech therapists,disorders, disabilities or needs for and others. However, different opinionsspecial support were assessed by multi- between professionals or betweenprofessional committees or commissions professionals and parents in questions(in Russian Federation Pedagogical- of preschool choice, nonetheless mayMedical-Psychological Committees, lead to explicit conflicts between thePMPK, in Belarus Medical, Pedagogical orientations, as described above (Janson &and Psychological Commissions), which Zinchenko, in preparation). In such cases,then proposed placement. For children the proponents of defectology tend towith previously diagnosed “defects,” this take stances that are rather characteristicrecommendation would mostly result of the original medical defectologicalin enrolment in a special preschool or approach.sometimes in a special group, integratedin regular preschool premises, but It should be noted that there is not asegregated from typically developing big difference in principle betweenpeers.10 the deficit, correction, and profession- centred position of Russian defectologyIn comparison, the ECI-perspective and the diagnosis, treatment andconceives of the child as having many programme centred position of muchcompetencies and as capable of learning. medical and paramedical habilitation andThe goal for support and intervention is rehabilitation, for example in Westernto minimise activity limitations by relying Europe. It should also be remembered that,on these developmental resources, while defectology11 played an importantthe child’s parental attachment, and role in handling the extremely difficultthe home environment as the basis for post-war and post-revolution periods inoptimal development and learning. In the the Soviet Union, with millions of childrencase of preschool and later educational abandoned, undernourished, disabledenvironments, socio-cultural diversity or otherwise severely disadvantagedrather than the dichotomy between (Knox and Stevens 1993), segregationnormality and deviance is the major and institutionalisation of children withperspective regarding the child, with the disabilities was a widespread practice alsomain goal being participation, not only in the industrialised world until the 1960sin learning and cognitive achievement, and 1970s and even later. Inclusion is abut also in the preschool’s social arenas. new phenomenon in many countries, andConsequently, preschool provisions are not only in transition countries.more inclusive than self-containing.It should be added, that defectology in The term “defectology” continues to beits present form and as it is used in many used in the Belarusian special education community, often to refer to special9 In the case of the Russian Federation, in education and therapy for children witha draft Law on special education of 1999, ‘severe disabilities, although rarely so in relationdisorders’ are defined as: “physical or psychic to comprehensive inclusion in preschoolsdisorder expressed to such extent that education and schools. Officials and practitionerscorresponding to state educational standards that were visited mentioned several(including the specialized ones) is not available andeducational abilities are limited to acquiring basic reasons for this usage:knowledge about the world, basic self-servicing • Some say that the term continuesand labour skills, as well as basic professional skills” to be used simply out of habit.(Zinchenko, 2007). ‘Disorder’ is obviously treated as • The course of studies foran educational-administrative concept. defectology is part of the10 Russian federal law acknowledges eight approved curriculum ofdifferent types of ‘educational establishments’, for Pedagogical universities, and thepersons with speech disorders, hearing disorders, diploma for a defectologist aseyesight disorders, psychic disorders, orthopedic well as the advanced degrees ofdisorders, complex disorders, ‘willpower’ disorders, defectology have been officiallyand chronic somatic and infectious diseases. established in Belarus.Establishments can also be set up for “joint trainingof people with different physical and (or) psychicaldisorders, provided this does not hinder successful 11 As a term, ‘defectology’ was actuallymastering [of ] educational programs and there are introduced to Russia already before World War I,no medical counter-indications for such training”. in 1912, borrowed from contemporary German(Zinchenko 2007, p. 14). curative pedagogy (Knox & Stevens 1993). 17
  • 27. • A series of other terms for special training in the EU, North America or education activities dealing, for Australia for Belarusian specialists in example, with mental retardation the fields of early intervention, special (oligofreno-therapist), vision, education, and physical, occupational hearing, and speech therapy and speech therapy. Belarus should build continue to be grouped under on the strengths of its evolving system the term defectology. while integrating into it new functional • The MOE continues to use knowledge, methods and approaches the term officially as a formal used by ECI programmes in many other professional designation, and it countries. remunerates specialists labelled as defectologists according to official salary scales. • Retirement pay is calculated on the basis of a defectologist’s seniority and technical status, thus making it extraordinarily difficult to change this designation. • The positions and seniority of defectologists are officially established in Development Centres and other educational establishments. • Some defectologists are proud of their field, and they are reluctant to abandon what they consider to be their status and role in the field of education. • They tend not to view their role in an inclusive system of services, and this is an area for in-service training. • One of the strengths of the Belarusian system is that it is highly formalised and sustainable; however, as a result it is difficult to make fundamental changes except from the top echelons of ministries, the Council of Ministers, or Executive Committees of cities or regions. It could be predicted that slowly the entire Belarusian system using the term “defectology” will shift to another term along the lines of “early childhood intervention” or “special education” or “special pedagogy”. Indeed, in Belarus the MOE department dealing with special needs children is now called the “Special Education Department” and efforts are underway to change the title “defectologist” to “special pedagogue.” This change is also occurring in other transition countries. However, it will be important to ensure that specialists who were formerly called defectologists learn new skills and knowledge in order to avoid some of the continuing pitfalls of the defectological approach. It would be beneficial to consider enabling some additional18
  • 28. II.5 Inclusion issuesUNICEF’s guidelines for inclusion state: While the right to inclusion in the“…inclusion is not about inserting persons educational system is a valid argument bywith disabilities into existing structures; it is virtue of its value base, its positive impactabout transforming systems to be inclusive is an empirical question. The promotionof everyone. Inclusive communities put into of inclusive education is valid if it can beplace measures to support all children at demonstrated that inclusive educationhome, at school and in their communities. actually is preferable to segregatedWhere barriers exist, inclusive communities and self-contained classrooms in termstransform the way they are organized to of positive impacts on children. Themeet the needs of all children.” (UNICEF developmental and social significance of2007) peer relations in general is well established in developmental and social psychologicalInclusion, as a concept for a person’s research. Peer interaction promotesmembership and active participation in cognitive, communicative, and sociala certain social arena, and acceptance competencies in unique ways, increasesby the other actors in that arena, may capacity for emotional behaviour control,of course be valued and strived for in a and contributes to empathic and socio-variety of contexts. The most obvious cognitive understanding already at thecase is preschool and primary education12. preschool age (Odom, McConnell &Inclusive education is generally motivated McEvoy, 1992). The question may beboth normatively, as a matter of basic posed: Is this also the case in groups ofhuman and civil rights, and in terms of functionally different children? Extensivepositive impact on development, learning, empirical research demonstrates thatsocial participation and well-being. this is the case, not unambiguously andRepresentative normative expressions for everyone, but only under certainare given in international documents favourable circumstances.such as the Salamanca Statement of1994,13 the Dakar Protocol of 2000, United While children with developmentalNations Convention on the Rights of delays, disabilities and special needs inPersons with Disabilities and its Optional inclusive preschools tend to have fewerProtocol (United Nations (2006), UNICEF’s friends and be less socially integratedProgramme Guidance on children with than typically developing children, theydisabilities, and UNESCO’s Flagship on demonstrate more developed social andEducation for All (UNESCO, 2004). The communicative skills and bigger sociallatter specifies goals and strategies for networks than comparable children whoachieving inclusion of persons with have been placed in segregated settingsdisabilities. (Guralnick 1999, 2001, 2005, Odom & al. 2002, 2004). Parents find that inclusion in preschool settings contributes to improved peer- and friendship relations.12 Though not primarily addressed as such Children develop more accepting attitudein this section, there are reasons also to talk about towards differences. Typically developingissues of family inclusion (in the case of social preschool children adapt their cognitiveorphans) and service system inclusion (in thecase of parental empowerment and leadership in and communicative registers to theservice planning and provision). capacities of their functionally different peers (Guralnick, ibid.). According to13 “… all children should learn together,wherever possible, regardless of any difficulties qualitative studies of the communicativeor differences they may have … There should patterns in interaction, negative attitudesbe a continuum of special needs encountered in towards, and evaluations of, peers withevery school” (World Conference on Special Needs disabilities are related to perceivededucation: Access and Quality, 1994). 19
  • 29. disturbances in activity, rather than to • Adapting physical environments, children as such (Ytterhus 2000, Janson educational materials, toys and 2001, 2007). Access to physical, social play equipment; and symbolical properties of preschool • Planning activities, individually and play premises (Janson, 2001), and for groups, to provide special and promotion of peer related social support within the context of competence (Guralnick 2001, McConnell general and collective preschool 2002, Odom & al. 2004), is vital to promote activities; togetherness in spite of differences. • Cooperating closely with parents Environmental arrangements, group of special needs children in friendship building, teacher-led as well as order to learn about each child’s peer-mediated interventions (peer buddy strengths, abilities, interests, and programmes), and direct child-specific personality; support are possible strategies to obtain • Communicating and cooperating this goal (McConnell 2002, Odom & al. with all other parents to create a 2002, 2004). While focusing strengths positive social atmosphere and and competencies in such interventions, a demystified attitude toward teachers must be aware of the kinds of functional differences; physical and social barriers caused by • Cooperating with early interven- certain types of functional differences. tion specialists (occupational A condition for inclusion and social therapists, physiotherapists, psy- participation in preschool learning and chologists, special educators, peer communities is the teacher’s values, speech and language therapists) attitudes and competencies, which to adapt the physical environ- should actively reflect such awareness, ment, create optimal activity con- and in the case of peer interaction, also ditions, and select and construct trust children’s ability to solve social education and play equipment, challenges, and respect the need for peer and independence in designing their own • Building co-responsibility among activities (Corsaro 2005, Janson, 2007). preschool personnel for all children rather than assigning a In summary: preschool inclusion is an specific child as a “task” for only internationally embraced programme one staff member. approach, with a strong ethical, To achieve such changes, inclusive humanistic and equalitarian value base. education must be seen as a concern Inclusion is also, in general, in accordance for individual preschools, parents and with what behavioural and educational children and as a challenge for the science demonstrates as positive whole socio-cultural ecosystem, of conditions for promoting development, which preschool and school is but a part learning and social participation. In (Guralnick, 2005, Odom & al, 2002) as well the specific case of developmental and as for society at large (UNESCO, 2004)14. functional differences, however, research and practice also point to potential A fully inclusive system, meaning that barriers to achieving such goals. Barriers all children, independent of type and can be removed, through overcoming degree of delay, disability or need of challenges for inclusive education, special support, are members in the including: same preschool or school classrooms • Understanding how barriers to and share the same social activities participation are created in the and learning opportunities, is still an interplay between environmental exception. Almost all countries that conditions (perceptually, advocate inclusive education in principle physically and socially) and also provide specialised education specific differences or disabilities; according to certain guidelines (for • Providing in-service training and instance severe multiple disabilities) and special educational support to for certain groups (for instance deaf and inclusive preschool personnel; hearing impaired using sign language, • Encouraging preschool and children with autism spectrum disorders). school teachers and leaders to build strong community 14 Conditions for inclusion in Russia are relations for promoting inclusion discussed by Iarskaia-Smirnova (2001/2002), Starikova (2003/2004), Zinchenko (2007), and throughout the community; Janson & Zinchenko (in prep.), in Ukraine by Sofiy, Svarnik & Trohanis (2006).20
  • 30. Full inclusion can also be supplementedwith part-time inclusion, so called “clusterinclusion,” “reversed inclusion” (a smallgroup of typically developing childrenis included) or “social inclusion,” wherefunctionally different groups sharethe same general location, but not theeducational programme, and contactsare at best limited to recreational andleisure activities.1515 For a comprehensive discussion ofinclusive programs, see Guralnick 2001. 21
  • 31. II.6Continua regardingconceptual approaches to ECI Given the many traditions and conceptual approaches to ECI in various world areas, currently a perfect ECI system does not exist. However, over the last 35 years, much has been learned about how to design, implement, and evaluate ECIChild-centred services: services. Child-centred and family-build on each child’s focused systems work best. Suchstrengths and abilities; systems help parents to value theirstrive to meet the children highly and empower them tocurrent and emerging advocate for their children at all stages ofneeds of each child; their development (Shonkoff and Meiselsprovide individualised 2000; Guralnick 2005; European Agencyservices rather than for Development in Special Needs 2005;fitting the child into an Odom et al 2003).established model; andembrace the child’s role Substantial experience exists in bringingin the family. sustainable ECI services to scale in countries. Many “common sense”Family-focused services: approaches to programme developmentempower parents; appear to be logical but in reality they arehelp them advocate “blind alleys.” On a case-by-case basis,for their child; are national ECI programmes can be helpedresponsive to parents to avoid them.and the extended family;ensure parents are Based on their experience in studying ECIpartners in assessments, and other ECD systems as well as on-siteservice planning, and structured observations in Belarus, theevaluation; involve authors identified a series of continuaparents in all services regarding conceptual approaches torelated to their child; are ECI. The following criteria were usedfriendly and sensitive in later sections to provide a profileto family cultural values of each major type of programme inand traditions; and meet Belarus serving children with disabilitiesfamily expectations or developmental delays. Systems forwhile coaching them on serving children with special needs andparental rights, roles their families were found to vary greatlyand responsibilities. with respect to the following continua.22
  • 32. Continua regarding Conceptual Approaches to ECIOverall rating of participationParticipatory approach ............. Provider-recipient approachParent involvementParents’ rights emphasised ............. Specialist opinion sole criterionParents involved in assessments ............. Specialists assess aloneParents actively help design IFSPs ............. Parents’ role defined by specialistSocio-culturally appropriate services ............. Centrally planned and imposed servicesChild and family strengthsFocus on child & family assets ............. Focus on deficit, delay and riskMaximise child’s ............. Correct child’s deviancescompetenciesIndividualised Family ............. Child record, set routinesService PlanInterdisciplinary approachesMedical/education services ............. Medical/educationintegrated services separatedInterdisciplinary assessments ............. Multidisciplinary or single disciplinary assessmentTracking system & shared ............. Separate agencydatabase records onlyService flexibilityHome/community outreach ............. Centre-based childfor child identification identification onlyHome services regular part of services ............. Centre-based services only rigid service accessIn Part III, these continua are used asheuristic devices to profile and comparevarying types of services for ECI, specialeducation and inclusive education inBelarus. Other continua could be added,but these fit Belarusian programmes.Programme ratings on the continua,expressed as numerical scores, arepresented at the end of most of theprogramme descriptions. The rating oneach continuum varies between 0 and100. The higher the rating on the left pole,the closer the programme is to meeting“ideal” ECI service provision. These ratingsare admittedly notional but they arebased structured field observations andinterviews. 23
  • 33. PART III:The Belarusian Support System forFamilies with Special Needs Children 25
  • 34. III.1 Overview of the system for ECI, special and inclusive educationBelarus is a signatory to most key inter- The varied services of the MOE and thenational conventions and declarations MOH will be described below in detailregarding children with disabilities and because they are the principal players inother vulnerabilities.16 As of this writing, the system. MOLSP only plays a supportBelarus had not yet signed the United role. It directs 156 Family Support Centres,Nations Convention on the Rights of Per- including 9 in Minsk and 147 in the rest ofsons with Disabilities and its Optional Pro- the country. The Family Support Centrestocol (United Nations 2006) that provides do not play a “gate-keeping” role withimportant safeguards for young children respect to ECI services in Polyclinics or towith disabilities including the right to MOE’s Development Centres for childrenremain with their families, receive early with special needs. Rather, they receiveintervention services, and be given referrals from the ECI and Developmentopportunities for inclusive education. Centres.Since transition, ECD leaders of Belarus In 2006, the Family Support Centreshave significantly reformed and up- served 23,600 children with special needsdated health and education structures, from birth to 18 years of age and theirand created new programmes based on parents.17 In 2006, MOLSP also managedinternational research and programme 9 boarding schools that served 1,135results. Many inter-agency agreements children with severe delays from birthand protocols have been established to 18 years of age. They receive referralsto promote coordination between from MOH and MOE centres for protectiveeducation, health and family therapy services, including family therapy,services. Services have been largely counselling, parent education anddecentralised to respond to child and support. Their specialists coordinate withfamily needs at the community level. MOE and MOH programmes for young children, provide advice on curricula,Belarus has a large system for vulnerable train personnel, and give monitoringchildren, including ECI, special education information and feedback on programmeand inclusive education services. This services.focus of this document is on services forchildren with developmental delays or In addition, the Ministry of Finance (MOF)disabilities or a high risk of disability. It plays a key role in supporting the ECI anddoes not attempt to review all forms of Special Education System of the MOH,child care provided in Belarus. MOE, and the MOLSP and also participates in inter-institutional coordination. TheThree main programme approaches MOF provides their annual budgets,for serving high-risk, developmentally and these ministries follow the samedelayed or disabled children are guided principles for financing children’s services.by three leading ministries: MOE, MOH General core budgets are provided forand to a lesser extent, the MOLSP. Chart administrative expenses, and additionalIII.1 Services for Special Needs Children grants are given for costs such asin Belarus presents a schematic overview professional salaries, food, supplies andof this large and impressive system. equipment, depending upon the number of children served. In addition to having a16 Belarus is a signatory to the Universal strong legal basis, the full involvement ofDeclaration of Human Rights (United Nations 1948), the MOF as well as MOE, MOH and MOLSPConvention on the Rights of the Child (United Nations1989), Salamanca Statement and Framework for directors and planning offices has helpedAction on Special Needs Education (UNESCO 1994), ensure the sustainability and expansionand the Convention on the Rights of Persons withDisabilities and its Optional Protocol (United Nations 17 Statistics are unavailable for services2006). rendered to children less than six years of age. 27
  • 35. Chart III.1: Services for to scale of programmes for high risk, System” enables programmes to accessChildren with Special developmentally delayed and disabled pertinent governmental regulations,Needs in Belarus children in Belarus. institutional plans, meeting and training schedules, and other information. These A strong system for central guidance and unified systems permit quick programme coordination has been combined with monitoring and accountability; however, decentralised services. This system has they do not include systems for making been developed during the past eight quantitative or qualitative evaluations years in Belarus and it continues to evolve or tracking children over time. All as a long-term process. Ministries guide programmes visited lacked internal their regional directorates that in turn evaluation systems, control groups, and supervise Executive Committees that longitudinal impact studies. Pre- and establish programmes for cities, sub- post-assessments are conducted to serve regions and communities. In the case of individual children and parents; however, Minsk, the ministries supervise Municipal results for cohorts of children have not Executive Committees for Education, been compiled and analysed. A system Health or Social Protection that are for assessing programme outcomes composed of local leaders, appropriate is urgently required for purposes of professionals, and other authorities. improving local planning to meet Executive Committees control the evolving needs and to ensure service budgets of each municipality or region as quality. well as all programme budgets, expected service levels, and supplies including food The three ministries constitute a for children. This partially decentralised “system” because detailed inter-agency approach requires continuous attention agreements, regulations and guidelines with respect to participation and quality. have been developed to permit cross- sectoral coordination and collaboration. One computer system unites all Many inter-sectoral regulations have been government bodies, providing a common developed, and more are anticipated. database for programme management. Several of these agreements (listed in In addition, a computer-based “Atlas Annex II), are available in a separate28
  • 36. CD ROM. They include official laws,resolutions and agreements that enablethe MOE and MOH to work together to:identify children with high-risk status,developmental delays and disabilities;refer children and parents to appropriateservices; establish a recording keepingand tracking system for children andtheir parents; keep children withdevelopmental delays and disabilitiesunited with parents; help parents topromote their children’s development;provide health, educational andprotective services to support families;and strengthen families that face multiplestresses pertaining to dealing with achild with special needs plus poverty,substance abuse, and restricted livingconditions.Some programmes follow currentinteragency agreements and procedurescarefully while others are still learningabout them. This rapidly evolving systemis developing additional guidance to meetemerging needs and upgrade services.Most of all, monitoring and supervisoryservices are required at the local level toensure positive laws and guidance arefollowed and revised when needed. 29
  • 37. III.2Introduction to health,medical and education services In 2006 in Belarus, there were 632,913 are not used, the full range of a child’s children less than six year of age, and needs for holistic, balanced development because of the wide-spread coverage may be overlooked. In medical services, of health services, virtually all of them parents tend to become onlookers rather received primary health care as well as than active participants in their children’s special health services, as needed. The services. Physicians often regret that country’s Polyclinics are natural points of when children return home after costly entry for identifying and serving special treatments, they tend to fall back in their needs children. However, they do not development. However, physicians often identify all of the children, and due to an lack the skills to guide parent education unwillingness to accept their child’s status and support activities, and with the and to social stigma related to having a exception of a few visiting nurses, child with a disability, some parents are home visits for follow-up activities are reluctant to use rehabilitation services. not conducted. Referrals to ECI or MOE programmes may be made, but parents Health intervention services in Belarus may not use them unless follow-up for children with at-risk situations, outreach is conducted to help transition developmental delays and disabilities them to new services. vary from ECI Centres with Inter- disciplinary Teams (IT) to “Dispensaries” Educational services for children with and “Cabinets” with groups of health and at-risk status, developmental delays education professionals. These health and disabilities are varied in Belarus. services currently vary with respect to Increasingly they are being brought into form, content, methods, availability, and the conceptual and methodological types of specialists. Health services use framework of the MOE’s Correction and a wide range of mainly medically based Development Training and Rehabilitation assessments, often feature ITs, and work Centres, hereinafter referred to as with parents to prepare Individualised “Development Centres.” They have a Family Service Plans (IFSPs). They focus wide range of “defectologists,” other on the holistic, balanced development of special educators and some health the child, and usually provide continuous, specialists who work in the Centres, year-round and longer-term services preschools and schools. Education for children and parents. Wherever services use many types of assessments specialists have been trained to conduct and a variant form of IT that emphasises interdisciplinary assessments and plans, several areas of ‘defectology’ as well as services tend to be more balanced and health specialisations. They collaborate participatory, and less dependent upon closely with parents and provide parent solely expert approaches. education and support. Individual Development Plans (IDP) or Individual Medical Rehabilitation Centres use a Education Plans (IEP), and Individualised medical model to serve children with Transition Plans (ITP) are prepared with one or more disabilities. Physicians are the presence or active participation of the main, and often the sole arbiter of parents. Educational services follow the a child’s service plan. This ‘corrective vacation schedule of the school system, approach’ wherein nurses and therapists and they do not provide services during work under the guidance of a medical long vacation periods. Staff loading is doctor, has the strength of ensuring good low but time at task is also low, leading to medical oversight, especially in cases fluctuating levels of services for children. where surgery, corrective therapies and As a result, children needing year-round psychiatric interventions are essential. developmental services often fall back However, in Centres where ITs and other in their development during vacation types of specialists and assessments periods or they migrate to health services30
  • 38. where they can gain the continuous with Disabilities, hereafter referred to asattention they require. These services are the “Belarusian Association,” that playsevolving as regulations are established key outreach, referral, counselling, andand training and professional meetings support roles.take place. Before presenting services for youngServices that are mainly health or medical children in Belarus, it is important to pointservices attached to the MOH include: out that no single classification system for • Polyclinic-based ECI Centres; disability is used throughout the country. • Child and Adolescent Psycho- Several classification systems are used, neurological Dispensaries or depending upon the methodological Departments; orientation of the group. Some groups • Medical Rehabilitation Centres did not use a classification system but and Rehabilitation Departments rather depended mainly upon a battery in Polyclinics; of assessments and clinical observations. • Infant Homes. These assessments and observations varied greatly. One ECI centre applied overMainly education services are attached to 50 normed and validated instrumentsthe MOE, and include: that had been developed in a wide variety • Development Centres; • Preschools and Child Care Centres of countries. Some of the assessments for Special Needs Children; and were for general development (Portage, • Inclusive Preschools that serve H.E.L.P, Bayley Scales, etc.) and others a small number of children with were for special language, physical or special needs. socio-emotional assessments. A medical rehabilitation centre used a variety of tests,Some families are enrolled in MOH and examinations and clinical observations,MOE services as well as MOLSP services. depending upon the training, knowledgeVarious agreements state that parents are and skills of the specialists. No attemptat liberty to select the services they prefer; was made to evaluate the quality orhowever some entities occasionally do accuracy of these approaches or to assessnot encourage freedom of selection. them in relation to prevailing practices inPartly for this reason, many parents seek EU countries. This will be a very importanthelp from the Belarusian Association of (and challenging) topic for future research Table 1. Sites visited byAssistance to Children and Young People and development work in Belarus. the Researchers Concerned Line Ministry Type of Service Name of Centre Health Polyclinic-based Early Childhood • ECI Centre at Polyclinic 19, Minsk Intervention Centres • Polyclinic ECI Centre, Kobrin Child and Adolescent Psycho- Health • Psycho-neurological Dispensary, Minsk neurological Dispensaries • Medical Rehabilitation Centre, Minsk Health Medical Rehabilitation Centres • Medical Rehabilitation Centre, Brest’s “Tonus Centre” • Development Centre, Minsk Education Development Centres • Development Centre, Kobrin’s Alpha Centre • Development Centre, Brest 31
  • 39. III.3Polyclinic-based EarlyChildhood Intervention Centres The ECI target group is children from birth ECI programmes try to combine centre- to three years of age and their families. based services with home visits to help From their initiation in 2002, a total of 17 ensure full parental involvement. Home ECI Centres had been developed as of July and community outreach is seen as an 2007,18 with plans to increase the number essential part of identifying children at risk to 29 by the end of 2008. In 2006, ECI or in need of special support. Programmes centres and groups served approximately emphasise parents’ rights, adapt to 2,700 children with high-risk status, family needs and requests, and focus on developmental delays or disabilities. parent involvement and empowerment. The planned expansion should enable ITs are always used, and ideally include an additional coverage of some 2,000 medical, health, psychological and children in 2008, for an annual coverage special education competencies. Due to of approximately 4,700 children. Annually, personnel limitations in some centres, upon the request of parents and medical such principles are realised to a varying personnel in polyclinics, more children degree; however, this rapidly expanding are assessed than are actually enrolled in system promises to provide the full range services. Those that fit programme criteria of disciplines soon in all Centres. for risk, delays or disabilities are enrolled or they are referred to other services, such The ECI Centres also work in tandem as the MOE’s Development Centres. Plans with MOE Development Centres, often for additional expansion of ECI centres taking children requiring health care are currently underway but they were services. However, many children with unavailable at the time of this study. language delays or other non-medical needs including mild conditions are also ECI Centres feature inter-disciplinary served by ECI Centres. Normally, at the teamwork for child-centred and family- age of three, ECI services participate in focused programming, using a mixed preparing for the child’s transition to health and education approach. They are MOE Development Centres, specialised based on ECI experiences in Russia, Europe preschools or preschool groups, or and the Americas. ECI centres provide ordinary inclusive preschool programmes, outpatient services to children with or at depending on the parent’s wishes and the risk for developmental delays, disabilities needs of the child. However, if needed and and related special health needs. Children increasingly upon parent’s request, some are served at parents’ request or they children continue to receive ECI services are identified and seamlessly referred to until they enter school or up to six years ECI services by Polyclinic physicians. In of age. Three Polyclinic-based ECI Centres addition, neighbourhood parents who were visited in Minsk, Kobrin and Brest. appreciate ECI services refer other parents Two of these are discussed below. to the Centre. III.3.1 ECI Centre at Polyclinic 19, Generally, services were designed in Minsk accordance with ECI principles, as outlined in Sections II.1.3 and II.6. They include Initiated in 2002, this centre is a pioneer in early nurturing and stimulation activities, implementing a holistic, family-oriented, health monitoring, medical treatment, and interdisciplinary ECI paradigm special therapies, developmental and in Belarus. The St. Petersburg Early family support, and parent education. Intervention Institute intensively trained this ECI team. During the first half of 2007, 18 Three ECI groups have been initiated with a technical staff of five persons (one in Minsk Polyclinics. In addition, a total of 14 physician/physical therapist, two child ECI Centres or Groups have been established in psychologists, two speech therapists), Polyclinics outside of Minsk.32
  • 40. 240 children received medical services, care, and support to help them deal withinfant and child development activities issues they are facing. They learn aboutand therapies, including children placed child development skills such as how toin short- or long-term programmes. Of promote speech development, selectthese children, 82 “graduated” with ITPs and use learning toys appropriately,that stipulated continued monitoring and nourish the child well, and help theirshort-term programmes of support and child become well integrated intodevelopmental activities, placement in society. They are taught their rightsMOE Development Centres, preschools and responsibilities, sign releases forand/or Medical Rehabilitation Centres. assessments, and control all services they receive. Parents listed parentalIn addition to full ECI services, upon the support as well as technical guidancerequest of Polyclinic physicians, MOE for maximising the development of theirDevelopment Centres, and parents, this children as important reasons for wantingsmall team assessed 182 newly referred to participate in both individualisedchildren less than three years of age, services and the Centre’s Parents’ Club.identifying 113 as having high social or Individualised services always includebiological risk or as mildly, moderately both parents and children during aor severely delayed or disabled.19 Parents home or centre session. Group servicesof children found to be developing quite include group activities for children andwell were given counselling and parenting Parent Club meetings for the adults butmaterials, including Belarus’ Positive all day child care is not provided as inParenting Programme (PPP) materials, Development Centres.child-rearing guidance by Centrespecialists, and referrals as needed.20 ECI Centre specialists spend considerable time assisting with children’s transition toEach child and family enrolled in ECI preschools or other service programmesservices has an IFSP profiling the child’s and with follow-up reviews. Basedstatus, child and family objectives, on a detailed analysis of each child’sdevelopmental programme, next competencies, achievements, andsteps to be undertaken, centre and continuing needs, in cooperation withparental responsibilities, and parental parents, centre specialists prepare anobservations and consent. Children with ITP and participate in sessions withsignificant developmental challenges are Medical, Pedagogical and Psychologicalassessed each three to six months,21 and Commissions to help identify the child’sthen in collaboration with parents, the IT best service options while protectingrevises the IFSP. The members of the IT family interests. They noted how hardemphasise the child’s positive capacities, they work to ensure that parents will betheir respect for parental rights, and they able to make the final decision regardingempower parents to develop the IFSP the placement of their children.in a positive manner. Parents receivecounselling regarding expected child ECI specialists noted that increasinglydevelopment stages, guidance on child children with multiple needs are being admitted to regular preschools and those19 During the first semester of 2007, the ECI specialised for children with disabilities.Centre’s five professionals provided 1,273 primary As Belarusian preschools gain moresessions and participated in 21 group sessions for experience in developing inclusivechildren and/or parents. They conducted multiple preschool groups, ECI specialists are askedassessments of 183 children and prepared 82 to help preschools understand each child’stransitions. This yields a total of approximately1,559 instances of service or an average of 13 needs. They work with parents, specialinstances of service per staff member per week, educators and preschool teachers to helpalthough in reality it would have been more them exchange ideas and assist childrenbecause ITs were used, resulting in up to twice with delays or disabilities adjust to thethe amount of services per specialist per week. preschool as well as assist other childrenAveraging each instance of service at 2.5 hours, and parents to accept and interacteach professional would have dedicated in excess positively with the child. However, theyof 33 hours of direct services per week leaving noted that children with severe disabilitieslittle time for session preparation and reporting, in- still are rarely accepted into regularservice training, or training other professionals. preschools or kindergartens. Anticipating20 The unique PPP materials are available rejection, parents of such children arefor use in Russian and English. (Vargas-Barón 2006) not encouraged to try to place their21 Assessments used include medical children in those schools. Indeed, someexaminations, Child Development Inventory (CDI), parents of children with severe disabilitiesKent Infant Development Scale (KID), Bayley Scales noted their concerns regarding how theof Infant Development, and many others. 33
  • 41. comparison of their children’s abilities The ECI centre annually serves an average with typically developing children might of 450 children from birth to three years be hard for their children. Increasingly, of age, providing physical therapy, parents reported that children with Down neurological and orthopaedic services. syndrome (DS) routinely enter regular Paediatricians, neonatologists and a preschools, so progress is being made. maternity home refer newborns to the (In some rural areas, Medical, Pedagogical Centre. Frequent problems encountered and Psychological Commissions are include: poor birth outcomes; heart bypassed because specialised preschools and digestive problems; neurological are unavailable. Such children are simply problems; illnesses or diseases; and placed in regular rural preschools with orthopaedic issues such as scoliosis. support from special educators.) Social risks include: single mother; maternal alcohol abuse or smoking; non- Monitoring and evaluation at the compliant mother; or child neglect or ECI Centre is based on child and abuse. The Polyclinic has a “school” for family records, assessments, IFSPs, young parents, including fathers, where service reports, and videos. Pre-post they present videos, counsel parents, and questionnaires have been used to teach them about infant and child care. ask parents about their expectations, experiences and perceptions of results. The ECI team prepares an “Observation These questionnaires or a variant of Plan,” with frequent home visits during this effort could provide a basis for the initial phase, and subsequently on a internal programme evaluation, but their case-by-case basis. In addition to physical specialists’ heavy case loads and lack risk, delay and disability assessments, of time has stood in the way of a more social risk is assessed. Personnel include systematic analysis and use of these a physiotherapist, rehabilitologist, data. This high level of services has also neurologist, and psychologist. Close resulted in decreased number of home cooperation has been established with visits, which they consider to be essential the MOE “Alpha” Development Centre to providing good ECI services. Given their in Kobrin, which sends psychologists, heavy workload, this team, which should psychiatrists, defectologists or speech play a central role in pre- and in-service therapists to help create ITs to conduct training of new ECI professionals, needs IFSPs and ITPs. In addition to ECI personnel, to be expanded. To expand the coverage the Polyclinic’s medical specialists may be of ECI services and meet expectations involved. Children identified with low for personnel training, additional birth weight, impairments or other factors competencies are required in the fields of are offered treatment. Children with neurology, paediatrics, special education, severe or multiple disabilities are referred social pedagogy, physical therapy, and to Brest’s Medical Rehabilitation Centre massage. or Polyclinics. Should parents disagree with specialists, they are encouraged to The ECI Team participates in weekly in- seek a second opinion in any Belarusian service sessions in Minsk’s main Child regional centre; however, it was reported and Adolescent Psycho-neurological that this rarely happens. Most children Dispensary to exchange ideas with other remain in Kobrin and receive services at ECI centres and Dispensary specialists, the ECI Centre in collaboration with the and six inter-sectoral workshops are also local Development Centre. These Centres held each year. The team also participated supplement each other’s services and in a major ECI Conference that was held coordinate closely. in 2006 for Belarusian ECI specialists and invitees from Georgia, Kazakhstan, Russia, As in Minsk, parental participation in ECI Norway, United Kingdom and Sweden. is considered vital. Parental presence at assessments, results reviews, and IFSPs III.3.2 Polyclinic ECI Centre, Kobrin is compulsory. IFSPs include sections on: physical rehabilitation; feeding and The ECI Centre of Kobrin, a small town nutrition; child care; structuring the near Brest, is located in a Polyclinic with child’s day; pedagogy; psychology; and a catchment area with some 20,000 positive emotional family development. children from birth to 18 years of age. Emphasis is given to positive parent-child Approximately 900 children are born there attachment and parent education and each year, and the ECI Centre assesses all support. ECI specialists use demonstration of them. Neonates receive home visits and practice to train parents about how and a medical card, and are examined for to work with their child. Parents are asked post-natal risk using a survey instrument. to do certain tasks each week with their34
  • 42. child. Once the child has an IFSP, parents demonstrating the ECI Centre’s success inare offered continuous services until he or preserving family units.she reaches three years of age, after whichthe child may be placed in a specialised, General ratings for ECI Centresinclusive or regular preschool.The Centre seeks to involve fathers and Based on their observations andpreserve families, and respite care is often review of documents, the authorsrecommended. If there are pervasive rated the ECI Centres in Minsk and Brest using the instrument called:family problems such as substance abuse, Continua regarding Conceptualmental illness or violence, the family is Approaches to ECI (See Section II.6).referred to MOLSP family therapy centres. The rating on each continuum variesIn the absence of improvement, parents from 0 and 100, with 100 representingmay lose their parental rights and the the attainment of “ideal” ECI services.child can be placed in an infant home These rankings are not intended to beor an orphanage; however, during the exact but rather to provide a generalpreceding six month period, fewer than profile of programme services. The1% of children in ECI services had been Minsk and Kobrin ECI Centres wereplaced in an infant home or orphanage, ranked as follows: ECI/Minsk ECI/Kobrin Combined Rating Participatory approach, overall rating 95 85 90* Parents’ rights emphasised 95 95 95 Parents involved in assessments 80 80 80 Parents actively help design IFSPs 95 55 75* Socio-culturally appropriate services 80 80 80 Focus on child & family assets 95 95 95 Maximise child’s competencies 85 65 75* Individualised family service plan 85 85 85 Medical/education services combined 90 90 90 Interdisciplinary assessments 90 70 80* Tracking system and shared database 65 85 75* Home/community outreach for child identification 65 85 75* Home services regular part of provisions 60 70 65* * Substantial difference in rating between the two centres.Comment and summary statement sizes. To a certain degree, the centres are Table 2. Ratings of successful in adopting an integrated “bio- Polyclinic-based ECIThe ECI centres had well-functioning psycho-social-pedagogical perspective.” Servicesalthough somewhat different ECI The Kobrin Centre tends to have a moreprogrammes. In general, they adhered to pronounced medical model with aECI principles presented in Part II. High stronger focus on children’s “problems”ratings of an overall participatory approach than the Minsk Centre; however, its closereflect an involvement of parents and a collaboration with the MOE Developmentgeneral holistic approach. They consider Centre enables it to supplement itsthe child and its development as part of mainly health services. In general, thesethe whole family situation, focusing on two ECI Centres, one serving a rural andassets and competencies rather than small town population and the other adeficits and correction. They emphasise large metropolitan city, have developed:parents’ rights and empowerment not well-established competencies in accordonly rhetorically, but also in practice, with with international standards; a stronga strong emphasis on involving parents esprit de corps with high ambition toin assessments, IFSP preparation, child provide excellent services; and well-development activities, and programme developed cooperation with medicalservice provision. The ITs seek to achieve and educational programmes. Theinter-disciplinarity in methodologies as Minsk Centre constitutes a paradigmaticwell as in roles in spite of their small staff example of how well functioning, 35
  • 43. culturally competent, and participatory ECI services can be metamorphosed out of a basically defectological tradition. The Kobrin Centre demonstrates that rural and small town ECI Centres can be cost-effective by networking local health, medical and education resources in function of children’s and families’ needs and by successfully linking them with larger services in cities. Centre personnel recognise the importance of disseminating ECI competencies nationwide and internationally. However, their heavy workload makes it difficult for them to find time to provide training services.36
  • 44. III.4 Child and Adolescent Psycho-neurological DispensariesOutpatient psychological and psychiatric neighbouring department, neurologists;services are provided through Child neuro-pathologists; and rehabilitologists.and Adolescent Psycho-neurologicalDispensaries or Departments (hereinafter The Dispensary provides assessments,referred to as Psycho-neurological development plans, individualisedDispensaries). One Psycho-neurological and group treatment, counselling, dayDispensary in Minsk and six regional care and respite care for children withDispensaries serve children from birth to developmental delays, autism, and18 years of age and their parents. hyperactivity. Entirely centre-based, the Dispensary does not provide homeIII.4.1 Psycho-neurological Dispen- visits or community outreach services.sary, Minsk The Dispensary provides support for the ECI Centres of Minsk, conducts mutualDuring 2006, the Minsk Dispensary referrals, and prepares assessment reportsserved approximately 2,500 children on children for Medical, Pedagogical andfrom the city as well as referrals from Psychological Commission meetings. Forother cities. It also supervises specialists the national expansion of ECI services,in all psychological “cabinets” (units) in the Dispensary is prepared to help withMinsk’s Polyclinics, and several of them training workshops, on-the-job trainingreceive young children and their parents. opportunities, and a regular exchangeOver half of the programme participants of experiences. An Action Plan is underare self-referred, and Polyclinics; MOE development for: identifying additionalDevelopment Centres; preschools; and specialists; designing pre- and in-servicethe Belarusian Association refer children. training; establishing interdisciplinary Table 3. Ratings of thePersonnel include: psycho-neurologists; teams; and equipping more facilities with Psycho-neurologicalpsychotherapists; psychologists; and in a learning toys and educational materials. Dispensary, Minsk Participatory approach, overall rating 50 Parents’ rights emphasised 85 Parents involved in assessments 60 Parents actively help design IFSPs 50 Socio-culturally appropriate services 70 Focus on child & family assets 75 Maximise child’s competencies 70 Individualised family service plan 75 Medical/education services combined 50 Interdisciplinary assessments 40 Tracking system and shared database 55 Home/community outreach for child identification 15 Home services regular part of provisions 5Comment and summary statement is less participatory than the ECI centresThe Dispensary provides specialised but this does not mean that Dispensariescentre-based services, with half of their are opposed to the participatory ECIpatients referred from other services. It model. On the contrary, the importance 37
  • 45. of expanding services for early childhood and of providing a child-centred and family-focused approach is emphasised. However, much of the Belarusian approach to early intervention is still mainly expert-driven, and Dispensaries take a mainly disciplinary approach rather than providing fully inter-disciplinary services. Although greater community outreach and family support are needed, no system for paraprofessional home visitors has been developed as yet. The social workers and experienced volunteers of the Belarusian Association are increasingly filling this need (See Section III.9).38
  • 46. III.5 Medical Rehabilitation Centres, MOHMedical Rehabilitation Centres focus care and education for women with high-on serving children with severe delays risk pregnancies, including: ultrasoundor disabilities. They are located in each examinations: amniocentesis; geneticregion, except for one, for a total of 11 counselling; and parenting programmes.Centres. Belarus’ Medical Rehabilitation Of the 1,955 children served in 2006, 781Centres in Minsk and Brest were visited. received 24-hour services; 1175 receivedThese large Centres include hospital and day care services; and most of them alsoout-patient services for children from received outpatient services.23birth to 18 years of age and their parents,and they receive referrals from Maternity The Medical Rehabilitation CentreHomes, Polyclinics, ECI Centres, MOE emphasises the importance of parentDevelopment Centres, and other services. rights and consent for services but it has not developed a system for ensuringIII.5.1 Medical Rehabilitation Centre, informed consent. The Centre oftenMinsk refers children to MOE Development Centres and ECI Centres and continuesThis Medical Rehabilitation Centre to provide them services, as needed. Itwas founded in 1981 as the first of its tracks children to see if recommendedtype in Belarus. The Centre has a wide assessments and services have beenarray of medical and some educational provided. The Centre’s short-term,specialists.22 In 2006, the Centre served acute and intensive care improves child1,955 children from birth to eighteen development but when children doyears of age, and counselled an addition not receive continuous and balanced500 children. Approximately 665 developmental activities, they may fall(34%) children were less than three back in their development. To ensureyears of age, and an additional 17% continuous services, close collaboration iswere less than seven years of age. ECI required between Medical RehabilitationCentres, Dispensaries and MOE Centres Centres and colleagues in all otherprovide concurrent services for some children’s services. Parents observedchildren. The Centre receives children rarely took part in sessions, interactedonly through referrals because it lacks with their child, or learned developmentaloutreach services. This concerns the activities. Although mothers often wereCentre director because children with present in treatment rooms, fathersminimal signs of a problem at birth may tended to wait outside. The Centre’slater develop delays or disabilities. Also, principles of “rehabilitation” are to startproblems may be identified at a Polyclinic when the child is very young; prevent laterbut parents may decide not to take delays by treating mild delays quickly;their child to the Centre for assessment. and emphasise preventive medicine asDue to denial, social stigma or family more humane, efficient, and less costly.pressure, some resist taking their child “Early selection” calls for identificationto the Centre for hospitalisation and/or and intervention from the earliest ageintensive treatment; however, if provided possible.counselling, most parents will enrol theirchildren. The Centre provides prenatal III.5.2 Medical Rehabilitation Centre, Brest’s “Tonus Centre”22 The Centre’s specialists include: 4psychologists; 6 ergo therapists; 12 speechtherapists; 24 kinesiotherapists; 1 physician- The Brest Regional Medical Rehabilitationphysiotherapist; 21 neurologists; 1 rehabilitation Centre, called the “Tonus” Centre, wasspecialist; 1 orthopaedic surgeon; 1 psychiatrist;1 psychotherapist; 1 musical therapist; 1 reflexo- 23 For infants and children, there aretherapist; 2 specialists in hearing impairments; 1 80 inpatient beds, 40 “day care” beds, and 40otorhinologist; and 1 paediatrician, plus 68 nurses. outpatient “places”. 39
  • 47. founded in 1996 as a non-governmental and expensive services. It also suggests organisation (NGO) called the “Association that the criteria and standards used to of Disabled People.” In 1998, Tonus pronounce a child “healthy” may need became a MOH Medical Rehabilitation to be revisited. Ultimately, in 2006, 1,057 Centre. It employs 80 professionals, and children from birth to 14 years of age is considered to be the largest and best were identified to have a significant equipped Medical Rehabilitation Centre developmental delay or disability that in Belarus.24 qualified for intensive rehabilitation services. Upon entry, the director, a During 2006, Tonus served 733 children neurologist and a paediatrician examine from birth to three years of age, and each child, and other specialists also can serve from 110 to 120 children a assess children, depending upon their day, providing from two to eight hours needs. of services a day. Some 40% of the children served live in Brest; 30% in Parents observe but do not participate in the Brest region, and 30% from other their children’s assessments and they do Belarusian regions. It also functions as not help to prepare service plans. Parents a demonstration centre for students are informed of their rights verbally and attending Brest University. The director through wall posters, and handouts. In stated that in 2006, of 14,782 infants born 2006, 437 children were taken away in the Brest region, only 1,816 (12.3%) from their families, and 614 parents lost were considered to be “healthy.” A total parental rights. In addition to sending the of 12,595 (85.2%) infants were considered children to Infant Homes or orphanages, a to be at risk due to “pathological few children are adopted, placed in foster development, prenatal infections, post- homes, and others enter MOE boarding natal conditions or social risks of the schools for special needs children. It was family.” This is the largest at-risk statistic stated that a few parents who have not the authors have seen in a developed lost their parental rights may be able to country. These numbers may be used regain their children at a later date. to argue for expanding rehabilitation services. However, the labelling of The International Academy of children as “at risk” of developmental Rehabilitation and Development delays or disabilities may have negative of Munich initially trained 28 Tonus impacts, especially if the situations could specialists in Brest during a period of one be resolved through other less intensive and one-half years. Recently, Tonus has begun to look outward. Initially, Tonus 24 Tonus has 9 rooms for physical trained Belarusian specialists from all over rehabilitation; 9 for psychological and pedagogical Belarus. In recent years, they have been work, including 3 Montessori rooms; and 1 each asked to concentrate on the Brest regionTable 4. Ratings of the for sensory development; ergo-therapy; sensory to expand services, perfect their serviceMedical Rehabilitation integration; movement training in groups; music training; and fine motor development. approach, and secure results. During theCentres MRC/Minsk MRC/Brest Combined Rating Participatory approach, overall rating 50 30 *40* Parents’ rights emphasised 65 45 *55* Parents involved in assessments 45 25 *35* Parents actively help design IFSPs 5 5 5 Socio-culturally appropriate services 65 65 65 Focus on child & family assets 45 45 45 Maximise child’s competencies 70 70 70 Individualised family service plan 70 50 *60* Medical/education services combined 60 40 *50* Interdisciplinary assessments 70 50 *60* Tracking system and shared database 70 50 60 Home/community outreach for child identification 30 50 *40* Home services regular part of provisions 10 10 10 * Substantial difference in rating between the two centres.40
  • 48. past three years, the Centre has trained86 specialists in the region, and it hashelped to open medical rehabilitationcabinets in Polyclinics in Kobrin, Brest andBaranovichi. In collaboration with BrestState University, Tonus has prepared acurriculum for training early interventionspecialists that currently is being reviewedby the MOE. Also, Tonus specialists havedeveloped many educational materialsand methods, currently available only inRussian. Tonus has made a major effortto involve MOE institutions in its services,including holding a conference anddeveloping a joint programme of inter-sectoral cooperation for children fromzero to three years of age. Tonus publishedand distributed a set of materials withthe goal of assisting MOH and MOEspecialists to identify children with delaysor disabilities. As a result, a joint SteeringCommittee for collaboration in the Brestregion was established to expand andimprove services for children and parentsthroughout the region. Given Tonus’significantly different approach, it isrecommended that an in-depth technicalreview be made of their clinical andtherapeutic methodologies, curricula,educational and training materials, andassessment tools.Comment and summary statementSignificant differences were foundbetween the Minsk and Tonus MedicalRehabilitation Centre. Both take apredominantly medical approach;however, they are making efforts tocollaborate more closely with MOE andECI services. As yet, neither service hasadopted ECI approaches of parentalparticipation, empowerment andinvolvement in guiding planning andservice provision. Also, considerablymore work is needed to achieve fullinter-disciplinarity. It is highly likelythat these Centres will remain strongmedical rehabilitation models that willcomplement ECI services of the MOH andMOE. 41
  • 49. III.6Development Centres, MOE The Correction and Development Training is needed to meet the goals of inter- and Rehabilitation Centres, hereinafter agency agreements. called the “Development Centres,” provide integrated special education for Because the Centres were founded children that have developmental delays recently, they are conducting intensive or disabilities. They complement MOE’s training to permit rapid growth. Special Preschool Services that include Understandably, service quality varies. a wide array of support and education The Centres were established to revise services for children with disabilities, and up-date defectological services either separately or with typically inherited from the Soviet Union. The developing children. Development MOE is making a major methodological Centres in Minsk, Kobrin and Brest were shift from focusing on disability to visited and will be described below. emphasising child-centred and family- focused ECI services. The Centres contain In 2002, MOE specialists proposed a health and medical elements but they new organisational and methodological seek to collaborate closely with MOH’s ECI approach for serving children with special and medical rehabilitation programmes needs, and with strong Parliamentary to provide a full range of ECI services. support, the legal basis for Development Centres was established. An updated Development Centres provide a wide law on Special Education was approved array of developmental activities through in 2004, with further addenda in 2005 home visits and centre-based services, and 2006 (See Annex II). The current child care, and parent education and Presidential Programme for Children counselling. They monitor each child contains a sub-programme for children from entry and services to transition with disabilities and a safety programme and enrolment in preschool or schools, to help prevent disability that is included as appropriate. At first they work to in the Demographic Safety Programme strengthen the parents’ emotional (2007 – 2010). Since 2002, the number of bonding to the child. Then they conduct Centres has grown rapidly to a total of 142 diagnostic assessments and form Centres, with 9 in Minsk and 133 in other ITs that may include a psychologist, regions. defectologist, teachers, and as needed, a social worker, nurse and a representative Development Centres serve children of a district centre. IDPs, called “Individual from birth to 18 years of age; however Programmes of Care, Education and only some of them offer ECI services Development,” are prepared by ITs. for children from birth to three and up They are reviewed and updated each to six years of age. Centre coverage in three to six months, depending upon 2006/2007 was 6,378 children, of whom child status and needs. At present, 1,307 (21%) were from birth to two years professionals prepare the IDP, and it of age and 1,981 (31%) were from three usually includes a diagnosis and activities to five years of age. With the help of to be accomplished with the child and Development Centres, the MOE manages the parents. They state they give priority a national database of children that tracks to parents’ expressed needs and interests, children with developmental delays and even though parents do not write in the disabilities when they move from one IDP or sign it. Parents are free to accept the community to another or from service IDP or not, and their rights are explained to to service. Representatives of the MOE them. No set format has been established and MOH agree coordination and cross- for an IDP, but generally it includes referencing of children and families has assessment results, developmental improved, but all feel more coordination goals, activities and expected results in: health; nutrition; social and emotional42
  • 50. development; learning play; cognitive appropriate learning materials, toys,development; language development; books and equipment.25gross and fine motor development; self-care; and general development. Centre specialists use national regulations to select children for services but theyBecause parents are important to child specialise in serving children withdevelopment, specialists work with them multiple challenges in order to be ableat least once a week, either in the home to offer in-service training opportunitiesor Centre. Parents participate in services for specialists in other institutions.26in a variety of ways: belonging to Parents’ Children are identified throughGroups; attending parenting sessions, referrals from educational and healthand participating in assessments, home establishments, parental self-referralvisits, and the preparation of IDPs or IEPs. and other parents. The Centre also usesEach Centre has a Medical, Pedagogical radio and newspapers as venues forand Psychological Commission. Centre reaching parents. Few fathers participatespecialists prepare reports for Commission in services but personnel stated theymeetings and provide technical support are witnessing a positive trend in thisfor preschool and primary school teachers regard. Centre specialists use the Portageof children with delays and disabilities. Project system of following the child’sIn contrast to continuous MOH services, lead in developmental activities, andchildren receive services during a they provide psychological support to10-month period, with a two-month mothers, fathers and the entire family.break for vacation. A monetary allowance is also given to parents to help avoid child abandonmentThe MOE supervises the Centres, and due to costs involved in rearing a childthe National Institute of Education’s with disabilities. Child development(NIE) Special Education Department activities are free of charge. The Centregives them technical support, as do the has a Toy Lending Library and distributesPost-Graduate Academy of Education, many books and handouts for parentsPedagogical Universities in seven regions, and professionals on child developmentand the Psychology Department of that come from Belarus, Russia and otherthe Belarusian State University. The countries. The Belarusian AssociationCentre’s ECI services are based in part on helps secure books, organise Parents’programmes and materials developed Clubs including one for parents of DSby the St. Petersburg Early Intervention children, and conduct home outreachInstitute. In addition, Germany, Ireland, and peer parent support activities.Sweden, the United Kingdom and theUnited States have provided training. To promote innovation, help preschoolsSeveral types of in-service training and schools maximise children’sare available to Development Centres development, and support childrenspecialists: joint training through and families, Centre specialists areseminars and workshops; cross-training preparing: new curricula and syllabusesamong Centres; and special conferences. for preschools; guidance for handlingIn addition, informal “unions” of localprofessionals meet on a regular basis. 25 The Centre has a room for auditory andThey discuss cases, developmental visual development including computers and talking manuals for visually impaired children; amethods and regulations. Joint training gymnastics and breathing room; several diagnosticactivities foster case management and rooms for mothers and children with one-waycoordination. mirrors for group observations of assessments and learning sequences; music rooms includingIII.6.1 Development Centre, Minsk marionettes; a sensory development room; a self- care room for occupational therapy; a creative craftsMinsk’s main Development Centre was workshop with art and sand therapy; a gardenestablished in 2004 as a demonstration, room with animals; rooms for medical assessmentstraining and resource centre for the city and examinations; rooms for physiotherapy; a swimming pool and a room for hydrotherapy; ergo-and the country. It is a spacious facility therapy and exercise rooms; a room for vitaminwith well-equipped rooms for training drinks, juices and herbal teas; a well-organised andworkshops, demonstrations, assessments, colourful library filled with hundreds of books; andindividual work with parents and children, a room for storing children’s records and over 60and group activities for children. Its standardised assessment kits.rooms are filled with developmentally 26 Centre personnel include: defectologists, teacher-psychologists, neurologists, rehabilitation physiotherapist, massage nurse, nurse therapist, ergo-therapist, and a hydro-therapist. 43
  • 51. children’s emotional problems; and disabilities who were judged to be unable manuals for a wide variety of specialists. to go to ordinary preschools. The centre Some Centre specialists are encouraged director quickly realised that a greater to develop special projects or pursue range of specialists was needed to serve advanced degrees at the Magistratura the children. When it became impossible or Ph.D. levels. Some are interested in to attract external funding, the Centre conducting evaluation research but lack converted to a Development Centre of the time. the MOE in 2003. Because the Minsk Development Centre Alpha Centre has defectologists, speech is a training, resource and demonstration therapists, a psychiatrist, a massage centre for the country, its personnel therapist, a recuperative medical trainer, have exceedingly small child caseloads. psychologists and nurses. Because it has Currently, on-site services are provided for some medically trained specialists, the only 18 children less than three years of Centre is able to provide daily on-site age. In addition, they serve approximately services for some children with medical 50 children less than three years of age needs but it lacks the full range of who visit the centre for consultations. In medical specialties that are required for specialists’ weekly Plans of Activities, they some children, hence the referrals to the usually allocate their time as follows: 60% local ECI services and to Tonus in Brest. direct services with children and parents; Paraprofessionals participate in Centre 20% diagnostic work with children and activities. Secondary school students play participation in Commission meetings; with children, take them on field trips, and 20% conducting training activities and and arrange for a summer camp. Alpha counselling professionals. The director specialists have found this to be beneficial and most specialists are certified as for the children as well as for the students. official trainers and often serve as trainers The Centre seeks to serve town and rural of trainers as well as mentors. They have families with at-risk, developmentally an annual schedule of 32 methodological delayed and disabled children, providing workshops and 60 workshops for the both ‘defectological’ and physical training. Council of Directors, specialists from Children with multiple or severe delays or the Belarusian Association, and district disabilities are referred to Tonus for short- training specialists. They also hold to medium-term services, and then Alpha national training workshops including follows up according to IDP provisions for roundtables of Centre directors. each child. Because Kobrin’s Polyclinic lacks a neurologist and some other In addition to on-site training, specialists medical specialties, approximately 50% of present workshops and demonstrations the children served by Alpha have gone in special education preschools, inclusive to Tonus in Brest at one point or another preschools and regular preschools with for intensive medical rehabilitation or special education support staff in Minsk psychological services. and the regions. To ensure quality, each Centre specialist receives frequent in- Kobrin’s Polyclinic, ECI Centre, community service training. The director and two vice- members, and parents refer children to directors of the Centre provide monthly Alpha Centre. In July 2007, it provided full- training for their specialists. Furthermore, day services for 36 children with multiple their own work with children is observed, developmental needs, from infancy and once a week they mentor each Centre onward. Approximately six to eight hours specialist. are devoted to developmental work. Services are provided all year round, with a III.6.2 Development Centre, Kobrin’s shorter summer break than in Minsk. Their Alpha Centre major goal is to integrate special needs children into society and to ensure they go As noted in the section regarding to kindergarten and school, if possible. As Kobrin’s ECI Centre (See Section III.3.2), children transition to preschool or school, close collaboration has been established Alpha defectologists and psychologists between MOH and MOE institutions. This work with school colleagues and assist partnership provides an exemplary model them with developmentally appropriate for inter-institutional partnerships in activities. Some other children receive other countries at regional levels. Similar brief services from Alpha, such as speech to the ‘Tonus Centre’ in Brest, Kobrin’s therapy. Children with multiple disabilities Development Centre began in 1998 as a deemed to be beyond the capacity for care Belarusian NGO called “the Alpha Centre.” and education in a school setting receive At first, it served eight young children with continuing services at Alpha. Alpha44
  • 52. specialists conduct joint assessments exercises and massages are provided, andand planning sessions with ECI centre a psychiatrist and paediatrician are on sitepersonnel in the Polyclinic in order to to assist, as needed. This Developmentmaximise the use of their resources Centre, like others of its type, is a mainlyand avoid unnecessary duplication of educational service with some healthservices. They work with parents alone, in and medical aspects in order to providegroups, and with their children because comprehensive and balanced services.they believe family harmony is essential Children with significant physical delays orfor maximising child development. They disabilities are served by Tonus. The Vedademonstrate activities for parents to do Centre has specialised defectologists,with their children in their homes and teachers, psychologists, a paediatrician,in the Centre. They use the Belarusian and a massage specialist-physiotherapist.Association to conduct home outreach to The Centre receives referrals from Tonus,invite parents to join their Parents’ Club. and some children are served jointly.The Centre benefits from strong parentaland community support. In July 2007, the Centre’s database currently had 2,118 children in activeA Kobrin database is maintained that links services. Five preschool groups withthe Alpha Centre, the Polyclinic, and the 76 children are provided for those withECI Centre. All children with a risk, delay serious disabilities. Fifty percent of theseor disability are registered in the database, children are relatively immobile. Likeand it is updated twice a year. The Kobrin Tonus, many children served in the Vedacommunity is dedicated to identifying, Centre receive short-term, intensiveassessing, serving, tracking and following- services rather than continuous servicesup all children in their database. as found in Minsk and Kobrin. Usually longer-term, continuous services areIII.6.3 Development Centre, Brest required to ensure children do not fall back in their development betweenThe Brest Development Centre, also called service periods.the “Veda Development Centre,” is alsoclosely related to the local Polyclinic, ECI The Veda Centre promotes parentservices and Tonus Medical Rehabilitation participation through holding monthlyCentre. Veda receives referrals from those Parents’ Clubs and providing individualcentres, parents, and preschools and counselling and peer support groups.assesses over 1,000 children annually. Professionals train parents in how toWhen children are assessed, parents are communicate with their children, andinvolved and asked about their interest in Centre specialists focus on father/childreceiving services from the Veda Centre. interaction; however, it was reportedAfter assessment, it was reported that the that over half of the children lack fathers.Centre’s Commission reviews the child Parents are included in Commissionand prescribes a course of psychological meetings wherein specialists discussand pedagogical rehabilitation but not assessment results and parental activities Table 5. Ratings ofmedical rehabilitation. However, physical to improve their children’s development. Development Centres Combined Rating Participatory approach, overall rating 60 Parents’ rights emphasised 85 Parents involved in assessments 80 Parents actively help design IFSPs 45 Socio-culturally appropriate services 60 Focus on child & family assets 90 Maximise child’s competencies 80 Individualised family service plan 80 Medical/education services combined 75 Interdisciplinary assessments 65 Tracking system and shared database 65 Home/community outreach for child identification 75 Home services regular part of provisions 70 45
  • 53. They hold meetings with parents later in the year to summarise intervention results and assess the type and frequency of services. Few home visits are made because their regulatory framework does not permit them, and they feel parents prefer to visit specialists in their centres. It proved difficult to rate the Development Centres on all dimensions due to visits made during the centres’ vacation period. Therefore only a combined general rating is offered to illustrate key differences from health programmes reviewed above. Comment and summary statement In general, the MOE’s Development Centres are not as child-centred and family-focused as ECI Centres in Polyclinics. Although the Minsk and Kobrin Development Centres are judged to have similar profiles with respect to ECI services and participatory practices, the Brest Development Centre more medically oriented, reflecting its close relation to the Tonus Medical Rehabilitation Centre. With additional personnel training, Developmental Centres could achieve essential ECI goals as child-centred and family-focused services. The Minsk Centre would be an excellent site for in- service training and mentoring activities. Kobrin’s Centre, that coordinates with the ECI Centre and Polyclinic, has achieved a high degree of interdisciplinarity and parent involvement in its inclusive services. Its valuable inter-institutional database tracking system might serve as a model for MOE and MOH tracking and follow up in all regions of the country.46
  • 54. III.7 Infant Homes27Infant Homes, although outside of the in 2004. An evaluation of a programmerealm of this study, play a role in the for family preservation noted, “In recentsystem for at-risk, delayed and disabled years the Republic of Belarus has passedchildren from birth to school entry. In a number of laws, and developed Stateaddition, an Infant Hospital for severely programmes to support families in caringdisabled children not expected to survive for their children. As a consequence, inbeyond a few weeks or months provides the period 2001 – 2005 the number ofloving care and gentle perceptual and children placed in orphanages decreasedphysical stimulation. by 150% while the number of children placed in various forms of family careInfant Homes are managed by the increased by 130%” (Sivuha 2007). ThisMOH, and they represent remnants of increase is mainly connected with thethe outdated approach to disability rise in the number of foster families. Asdeveloped during the former Soviet Union. of January 2007 there were 3,231 fosterThe Homes represent a mainly medical families in Belarus.approach for caring for orphans or “socialorphans,” and especially for children with Deprivation of parental rights has been thedisabilities or developmental delays that main cause of children becoming “socialare “taken by the State.” orphans,” and it has been increasingly associated with parental neglect andMany but not all agencies and specialists substance abuse. As of January 2006,of Belarus are making a major effort to overall there were 32,  878 orphans andreduce national dependency upon Infant children without parental care in Belarus.Homes. Prevention of children from falling Of them, 16,451 children (50%) had beenin the category of orphans is reported to placed in substitute families (adoption,be a national priority, as may be noted guardianship, foster care, family typein the Law entitled “On Social Protection homes). Some 11,582 (35.2%) orphansGuarantees for Orphans and Children had been placed in public residentialwithout Parental Care, as well as Persons institutions, and another 4,  845 childrenCategorised as Orphans and Children (14.7%) were living in public educationalwithout Parental Care” (December facilities that provide vocational training.2005) and a recent 2007 Ordinance # 18“On Additional Measures for the State The distribution of children’s placementsProtection of Children in Disadvantaged is presented in Figure 1. There is a clearFamilies.” These documents seek to trend of a reduced proportion of childrenstrengthen the rights of children in at-risk placed into orphanages, and an increasefamilies. They affirm the responsibility of in the proportion of children placed intoparents for nurturing and rearing their foster families, small group family homeschildren, and commit the government to and children’s villages. Adoption remainsprovide special support for at-risk families quite low.and children. Due to this new nationalpriority, care alternatives for orphaned As of 2006 six Infant Homes in Belarus stillchildren have changed considerably. served 822 young children with disabilities. Through special arrangements, nearbyAs of 2005, 68% of newly orphaned ECI services are beginning to help thechildren had been placed in different children in two Infant Homes. In the nearforms of family-based care versus only 56% future, ECI services will be made available for the other Infant Homes.27 Infant homes, preschools and theBelarusian Association of Assistance to Childrenand Young People with Disabilities were not visited/ By giving additional emphasis to prenatalinterviewed as part of this study; the discussion is education, health and nutrition care, andbased on secondary information. avoiding high-risk behaviours, Belarus 47
  • 55. is working to prevent serious anomalies100 and low-birth weight infants. In addition, significant efforts have been made to provide family outreach, counselling and focused social communications. An evaluation revealed that these initiatives 80 are meeting with considerable success (Sivuha 2007). By expanding ECI services throughout Belarus, it is likely that dependency upon Infant Homes will be minimised rapidly. 60 40 20 Orphanages Famileis of gardians Foster familes Small group family homes, children’s villages Adoption 0 Other 2001 2002 2003 2004 2005 2006 Year48
  • 56. III.8 Preschools for children with special needs, MOEBelarus provides a variety of options for they receive parent education and learninclusive education: about developmentally appropriate play, • individual children are included in their children engage in social play with regular preschools and preschool other toddlers, and they participate in programmes with the provision peer support “Mothers Clubs.” (Vargas- of special support to varying Barón 2006). degrees; • special groups are integrated Due to increased Government part of the time in regular investment in preschool education, programmes; Belarus has developed one of the most • special groups are physically extensive preschool systems of all of present but not functionally the transition countries. As of 2004, or educationally integrated in Belarus was investing 0.8% of GNP in regular preschools; preschool education (UNESCO 2006). • special preschools serve only Overall preschool enrolment increased children with delays and from 60.1% in 1995 to 79.3% in 2003 disabilities; and (Agranovitch 2006), and now is officially • residential institutions. stated to be 82%. At the present time, 100 percent of children of five years ofThe choice, in principle, is free for the age, including those with disabilities, canparent, but the Medical, Pedagogical and access preschool services. All children whoPsychological Commissions that assess begin primary education complete it, andchildren with special needs still have a the country has 100% youth and adultstrong influence on placement decisions. literacy. Few private preschools existAlthough one author previously had in Belarus due to a lack of governmentvisited preschools, they were not visited for support for private education. It is alsothis study principally because preschools difficult to assess the general qualitywere closed for vacation. Nonetheless it is of preschools because no comparativeimportant to review the options parents studies have been conducted on them.face with respect to preschool education. However, observations of a few select preschools conducted by one of theIt is important to note that in contrast authors revealed an outstanding level ofto several other countries in the region, developmentally appropriate educationalBelarus has achieved a high level of access activities and rich parent education andto educational facilities for children with support services (Vargas-Barón 2006).disabilities. Problems of quality of servicesand adequacy of training for providers If requested, regular preschools willremain but programme coverage is receive children from birth onward, butadequate and includes children with usually preschool begins at age two anddisabilities - including those in Chernobyl one-half or three years, and continues to- and most children in rural areas. age six. Preschool services for children and families with special needs rangeTo encourage women to have children, from a several hours a day to 24-hourimprove maternal-child bonding, and services (UNESCO 2006). For workingreduce child abandonment, Belarus mothers, infant care ranges from a fewprovides generous maternal leave and hours to 24 hours for one to six dayssupplementary income for up to three a week. Official preschool educationyears after birth. For this reason, few begins at three years of age, and 104%women send their children to preschool of children were enrolled in preschool inbefore the age of two and one-half. 2004, indicating that some underage andHowever, many take advantage of overage children are also found in themother’s days at local preschools where preschools (UNESCO 2006). Pupil teacher 49
  • 57. ratios are established at six children to They may maintain some contact with one teacher. UNESCO reports that only their families. A total of 62 boarding 64% of the teachers have completed schools under the MOE serve 7,598 expected pedagogical training; however, children, for an average of 123 children according to official statistics, 45.2% per boarding school. of preschool teachers have completed pedagogical university education and Special preschools mainly serve children 53% have received a pedagogical college with severe disabilities or profound mental education. Preschool education is free of retardation. They are not integrated or charge; however, parents are requested inclusive. There are 10 special preschools to pay for about 60% of meal costs. A in Minsk and 37 in regions, totalling 47 major effort has been made to increase preschools. Special Preschools serve 4,062 preschool coverage in rural areas. In 2004, children less than six years of age, for an only 45% of rural preschool age children average of 86 children per preschool. could access a preschool (Republic of Belarus, 2004). Today, coverage is close Special groups of children with to 60% in rural areas, especially because disabilities are placed in preschools but a flexible form of family and community they attend separate classes. They are preschool groups has been instituted. the predominant form of education for such children in the Belarusian education In line with the education system’s basic system. There are 428 special groups principles, MOE leaders have made a in preschools in Minsk and 846 special major effort to include children with groups in preschools outside of Minsk developmental delays and disabilities in for a total of 1,274 special groups in 532 preschools in appropriate ways. They are preschools [13% of all preschools in dealing with parental expectations as well 2003, (Ministry of Education 2004)] in the as long-standing social norms regarding country. They serve 16,112 preschool age educational quality and expectations that children with special needs [4.5% of all children with disabilities will be closeted children enrolled in preschools in 2003 away in special institutions. However, (ibid)]), averaging 30 such children per as in other countries throughout the preschool admitting special groups. world, this situation is changing rapidly. Increasingly parents are observing that Integrated groups are beginning to be inclusive classrooms are rewarding for developed in Belarus enabling preschool- both typically developing and disabled age children with disabilities to be children. included in some regular classes as well as separate classes. They are closer to what Parents of children with special needs is called “inclusive” preschool education have, in reality, several different in other countries but still not quite there. options for preschool education. With There are 27 preschools with integrated respect to children considered by local groups in preschools in Minsk and 180 Medical, Pedagogical and Psychological in regions, for a total of 207 integrated Commissions and their parents to be groups in preschools. These preschools able to benefit from preschool services, serve a total of 729 special needs children in theory children may enter separate, under six, averaging fewer than four inclusive or regular preschools. In children per group. actuality, not all options are available in all locales and not all Commissions Regular preschools (and preschool allow parents to have the final say on the points) where children with special placement of some children. needs are served through receiving special education support are also quite The following types of preschool close to inclusive services. They include arrangements exist for children with placing preschool-age children with special needs in Belarus: disabilities with typically developing children in 859 preschools in Belarus. Special preschool children’s homes Special educators (often called points of are orphanages that serve children who specialised support) are expected to work leave infant homes or are abandoned closely with Development Centres and during their preschool years. There are six ECI Centres to provide developmentally orphanages serving 401 children, for an appropriate guidance to children, parents average of 67 children per orphanage. and teachers. In 2006, 859 preschools received special education support to Special boarding schools are provided serve 22,894 children with delays or for older school children with disabilities.50
  • 58. disabilities, for an average of 27 childrenper regular preschool.These arrangements provide preschooleducation for a total of 44,198 childrenless than six years of age with specialneeds, which exceeds the total number ofchildren officially reported to have specialneeds (40,683 children). In addition,some 6,378 children are given preschooltype services in Development Centres.This situation may be explained in partdue to double counts and to the retentionof some overage children in preschoolservices due to parental preference andCommission decisions. 51
  • 59. III.9Belarusian Association ofAssistance to Children andYoung People with Disabilities The Belarusian Association of Assistance provide respite and foster care. Without to Children and Young People with this extensive corps of trained and Disabilities, referred to as the “Belarusian experienced volunteers, the Association Association,” was established in 1991. It is would be unable to achieve its goals. It one of the few – if not the only – NGOs needs additional specialists to provide devoted to supporting families with more training, supervision, specialised children with disabilities. Its main goal is outreach, and home visits for the over to create equal opportunities for children 4,000 families served, and to expand and youth with disabilities to participate services to more families throughout in all aspects of society (Belarusian Belarus. Association 2007). The Belarusian Association provides psychological, The Belarusian Association’s innovative social and legal support to families. They programme, “Families for All Children,” conduct advocacy services; provide proposed and launched a system to information; prepare, print and distribute prevent the abandonment of infants booklets, books and other educational with “psychophysical disorders of materials for parents and professionals; mild and moderate degrees” through and conduct conferences, workshops and placement with families (Ibid, 2007). seminars. They give young people with Services begin in Maternity Hospitals, disabilities training for employment as where the Association’s social workers well as leisure time activities for them and talk with the parents of newborns their parents. with disabilities. There is a continuing tendency among hospital personnel to In 1991, the Belarusian Association served encourage parents to relinquish disabled 9 parent groups, and by 2007, with support children to Infant Homes, signalling the from MOE, MOH, MOLSP, UNICEF and need for fundamental awareness raising others, it provides information, referrals and attitude change for several years to and other support for over 4,000 families come. Social workers make home visits whose children have mental or physical and provide timely psychological, legal, disabilities. It supports 64 community- medical and technical support to parents based member organisations: 9 in Minsk and relatives, especially in rural areas with and 55 regional organisations. Currently, few services. They help parents bond its paid personnel include a full-time with their child, be aware of their rights, director, two full-time social workers, learn about the positive results of infant a computer technician/publications nurturing and stimulation activities, specialist, a part-time psychologist, and assist them to freely consider their and a part-time music therapist. options. They encourage parents not Volunteers play critically important to place their child in an Infant Home, outreach and family support roles for inform them about available MOH, MOE ECI Centres, Medical Rehabilitation and MOLSP services, and provide support Centres, Development Centres and during the period between disability Family Support Centres. They identify identification and entry into MOH or children needing services, help parents to MOE services. Their volunteers, who are access appropriate programmes, provide parents of children with disabilities, give developmentally appropriate toys, videos new parents valuable peer support. They and booklets, offer parent education and social workers help parents register classes, and assist parents to transition the child, arrange for child care, and their children from MOH or MOE services set up short-term foster care or respite to preschools and schools. Working with care, as may be needed. Subsequently, the Foster Educators Association, they they monitor the family, provide parent also identify potential foster parents to education, and ensure parents can access52
  • 60. needed services. During 2006, Familiesfor All Children served 89 families with90 children. The Belarusian Associationreports that as a result of this programme,potential abandonment was preventedin 11% of cases, and in an additional 18%of the cases, problems were temporarilysolved. 53
  • 61. 54
  • 62. PART IV:Lessons from Belarusand Recommendations 55
  • 63. IV.1 Main triggers and drivers of the ECI and Special Education SystemThe triggers that have promoted media and learning tools that Belarusianconceptual and structural changes and specialists have developed to makethe development the innovative ECI their services culturally competent andand Special Education System of Belarus attractive.include: 1) the high priority placed onchildren and families, and 2) strong Another key trigger has been highgovernmental support for child and parental demand and use of servicesfamily development. Social values as well as well as the support of the Belarusianas response to evidence-based research Association for family outreach andare key in all countries to improving child support. Offering services is not thestatus, and positive Belarusian social same as access. Even though more needsvalues support the preparation of many to be done to increase access for youngspecialists who help ensure all Belarusian children less than three years of age, it ischildren will have opportunities to develop clear that many parents use, approve andtheir abilities to the fullest. The existence benefit from current services. The use ofof strong university and post-graduate increasingly child-centred and family-training programmes has unquestionably focused services undoubtedly is part ofaided system development. the reason for service demand growth. It is also revealing that parents often makeBelarus inherited an extensive educational toys and decorations for theinfrastructure of health, medical and centres and they consider the centres toeducational services from the Soviet be “home away from home” for them andUnion. The country could have allowed their children.this system to disintegrate, as was thecase in some other CEE/CIS countries. A series of drivers serve to maintainInstead, it was maintained and reformed the strength of the Belarusian ECIin important ways. Existing children’s and Special Education System in termsservices were linked with MOH, MOE or of continuing financing, improvingMOLSP structures, and then thoroughly quality, and ensuring sustainability. Thisrevised their conceptual frameworks, national system embraces all children ofcontents, and methods to resemble peer the country, and it is based on a robustservices in St. Petersburg, Western Europe foundation of legislation and inter-agencyand the Americas. They retained key agreements. The Ministry of Finance andfeatures linked to Belarusian culture in all Parliament continue to provide strongprogrammes: good nutrition and health; budgetary support for the programmes,art, reading and creativity; learning toys and they have increased key programmeincluding traditional marionettes and budgets over time. Specific ministers,puppets; environmental protection and deputy ministers, and departmentalnature; sports, music, dance, and theatre. directors have also played important roles in fields under the responsibilityOpenness to change is striking and should of MOE, MOF, MOH, and MOLSP. Citybe maintained and expanded. Belarus has and Regional Executive Committees formuch to give other countries and receive Health and Education composed of localfrom them. In the reorientation of the policy makers and leading professionalsexisting service system for children and in ECI fields have strongly supported thefamilies with special needs, collaboration system.with UNICEF and the Early InterventionInstitute of St. Petersburg has been very MOH and MOE leaders seek to complyimportant. Centre directors uniformly with international normative instruments,spoke of their willingness to innovate, and especially the CRC and most of theirand this capacity is reflected in many new services comply with its requirements.curricula, books, educational materials, Belarus has made a major effort to achieve 57
  • 64. child rights. Several national policies and Periodic official in-service training plans state they are working to comply sessions plus frequent informal meetings fully with this and other international to exchange ideas and experiences normative instruments developed to have created a continuous “learning safeguard the children’s rights. From legal organisation” approach within the ECI and and technical points of view, investment Special Education System. This valuable in children in Belarus is quite secure. capacity will help revise the System However, were the economic situation flexibly over time. The System provides of Belarus to suffer, it would be essential many opportunities for teamwork and has to protect these services. To date, they resulted in building strong inter-personal have been sheltered from fluctuations in and inter-institutional relationships and the country’s productivity and balance coordination. Teamwork is a major reason of trade. Because the MOH and MOE for believing long-term sustainability will have experienced fairly steady budget be achieved. Professionals who learn to increases during recent years, it can be work together and with parents are the hoped that children’s budgets will be backbone that maintains the System. increased to consolidate the services and Their knowledge, experiences, shared serve thousands more of the country’s responsibility and achievements will vulnerable children and families. sustain the ECI and Special Education System in the future. Another driver is the national capacity to prepare standards, regulations and guidelines for improving and coordinating programme services. This can be a two-edged sword because over-formalisation can lead to inflexible and restrictive guidance, as has occurred in ECI programmes of some countries. A strongly formalised system, in combination with highly specialised professional practitioners, may act as an obstacle to the flexibility and openness necessary in a child and family orientation. But such conditions could also be helpful when trying to change increasingly inflexible routines, founded in habitual thinking rather than in critical analyses of outcomes. A case in point could be the Medical, Pedagogical and Psychological Commissions with their heavy influence on transition and preschool placements after the initial period of ECI services. On the one hand, these Commissions represent solid and traditional authority, especially in the eyes of medical and educational bodies; authorities which can be very hard for parents to influence regarding their views on preschool placement. On the other hand, the Commissions’ role could be of significant importance, should they act as advocates for a non-defectological, flexible and inclusive view on the preschool’s role for children in need of special support. Belarus’ current regulations demonstrate the strong capacity of their systems to innovate. Clarity of definitions, roles, responsibilities, protocols and procedures combined with child-centred and family-focused services will help achieve improved system quality and expansion over time.58
  • 65. IV.2 Lessons learned and recommendations for BelarusIn addition to identifying main triggers regarding roles and responsibilities at alland drivers, 20 major lessons learned are levels: national, regional, and municipal.presented below regarding programme However, these documents cannotcontexts, inputs, processes and outputs. substitute for a national ECD Policy. ToThese lessons and recommendations ensure system sustainability, it wouldmay help other countries consider their be advisable to review all existing policyoptions as they design their ECD and ECI statements in education, health andsystems. social protection, harmonise them, and establish a consolidated ECD Policy that1. Develop and maintain strong policy would embrace all advancements madesupport and legal basis for ECI system. to date.Belarus has established strong policysupport and a firm legal basis for its 2. Revise the former defectologicalECI and Special Education System. The system, concepts and methodologiescountry currently lacks a unifying ECD to create a special education system inPolicy but were it to exist, a major strategy fact as well as name.would be devoted to this system and Belarus has been successful in developingits programmes. The Early Childhood MOH ECI Centres that meet most of theEducation Plan, Health Policy for ECD, basic ECI concepts and participatoryChild Protection Policy and the National and inter-disciplinary methodologies.Plan of Action for Children’s Rights (2004 Other medical and education services– 2010), and the President’s Programme for children with high-risk status,for the Children of Belarus (2006 – 2010) developmental delays and disabilitiesall support the ECI programmes. The still have some distance to go to achieveGovernment has made amendments this goal. They have maintained expert-to policies and included ECD issues driven and disciplinary approaches thatas a part of the National Children’s are less participatory. It is recommendedProgramme, and created an ECD Council that Belarus also move slowly from thethat promotes ECD regulations as well label and approaches of defectology toas a National Commission on Children’s an ECI and special education approach,Rights. Although Belarus lacks an with attention to retaining the strengthsEducation for All (EFA) Plan, the country of the current system while discardinghas virtually attained EFA. In addition to the correctional approach to childhaving achieved 100% literacy and 100% development.primary school completion, it has alsoattained universal preschool coverage for 3. Criteria for service eligibility shouldall five year-old children and preschool remain broad.education is provided for the vast majority One of the strengths of the Belarusianof children from three to four years of age, system is that the criteria for servingwhich is far more than is found in many high-risk, developmentally delayed, andindustrialised countries. The Millennium disabled children are very broad. SomeDevelopment Goals statement of Belarus countries have made the mistake ofhas had a positive impact on ECD. The defining eligibility very narrowly, therebyNational Development Plan does not precluding the early identification andmention ECI, but it does mention disability. treatment of developmental delaysIn addition, several policy statements, before children become more involved,agreements and standards have been much more costly to treat, and have lessdeveloped to ensure the quality of ECI successful outcomes. Belarusian healthservices for vulnerable children and services are sensitive to the needs oftheir families (See Annex II). Because high-risk children. They understand thatthe system is highly decentralised, early intervention and health preventionthese documents provide guidance services are essential during the prenatal 59
  • 66. and birth to three periods. Broad service on intimate knowledge of their criteria for ECI should be maintained. children, parents can make invaluable observations and provide essential inputs 4. Outreach services should be into these processes. Often the wide improved and expanded. array of planning approaches confuses More attention needs to be given to parents, and they begin to expect to play home and community outreach because subsidiary roles to the professionals. ECI according to statistics provided by the Centres seek to empower parents and MOE, many high-risk, developmentally help them assume overall responsibility delayed and disabled children ages zero for orchestrating the services they and to three currently go unidentified by their child will receive. Other centres treat health and education services. Most such parents kindly, but basically disempower children are identified when they go to them in their roles as parents. preschool or health practitioners refer them after the age of three. However, most Parents should give written consent to centre-based service providers in Belarus programme enrolment and participate resist conducting community outreach actively as members of Inter-disciplinary and home visits to identify children, Teams, and in all assessments, with the exception of visiting nurses individualised planning sessions, and and volunteers or social workers of the services. To ensure IFSPs, IDPs and IEPs Belarusian Association. The Association’s and ITPs pay consistent attention to the programme should be expanded. holistic and integrated needs of each child, it would be advisable to establish a 5. An inter-agency early identification, unified approach to child development, tracking and follow-up system is including common definitions, the same needed. or similar validated assessments, a similar Services for early identification, regular comprehensive IFSP for each type of ECI screening and assessments are needed. service, and a common service reporting MOE’s database for children and families form. The IFSP and ITP forms should appears to work well at city, regional include all developmental areas, inter- and national levels; however, it is not disciplinary assessment results, a service connected with MOH services and records. plan, spaces for parental observations It would be advisable to combine these and comments, and the duration and systems to ensure each child is tracked, frequency of services from all points served well over time, and does not of service (e.g., MOE, MOH, MOLSP or become “lost in the system.” At a general others). Because parents rarely sign and level, all statistics are collected from add their comments to these documents, ministries and collated by the Ministry for reasons of empowerment and of Statistics and Analysis, but this system parental and child rights, it is advisable should be separate from a confidential to explain the reasons they should do so. tracking system that would unite MOH ECI services have procedures to ensure Polyclinics, ECI Centres, Dispensaries, family privacy, and limited access should Medical Rehabilitation Hospitals, Infant be provided to individual child and family Homes, MOE Development Centres, and data. Safeguards should be put into all preschools. place with respect to both written and electronic records, and parents should 6. Ensure individualised plans are state who may see their records. developed in a participatory and consistent manner with informed 7. Develop comprehensive centre- and parental consent. home-based ECI services. ECI Centres of Polyclinics are skilled Community-based, comprehensive and in developing IFSPs with parents culturally competent home visiting and participating in all aspects of IFSP centre-based ECI and ECD services should preparation. Medical Rehabilitation be provided for the full range of service Centres and most Development Centres intensities, as outlined in Section II, prepare similar but different IDPs or IEPs, plus supportive day and evening child and most do not include parents in IDP care and respite care, as needed. A wide or IEP preparation. Rather, specialists tell array of centre-based services for ECI them the results of assessments along is provided in Belarus. Individual clinic with their professional recommendations visits for therapies are usually principally for services. Although parents need good but not solely provided by Medical professional advice, they should feel Rehabilitation Centres and Psycho- they are participating in assessments, neurological Dispensaries. Family visits planning and decision-making. Based are made to ECI Centres in Polyclinics or60
  • 67. to Development Centres wherein parents to children falling back in development.work with their child and the specialist, A system of flexible vacations, specialand also learn how to do developmental camps, and substitute services is neededactivities at home after the visit to to avoid these developmental losses.the clinic. Inter-disciplinary arenaassessments are mainly conducted in ECI 9. Develop linked parent education,Centres and some Development Centres. counselling and support services.Group activities for children are mainly Belarus provides extensive parentfound in ECI Centres and Development education and support services forCentres. Group activities for children all ECI and ECD programmes that arewith their parents are provided in highly praised by parents. SpecialistsDevelopment Centres and ECI Centres. of ECI Centres and various universitiesGroup activities for parents include parent have prepared educational materials foreducation classes in all MOH and MOE parents of children with developmentalECI programmes, and peer gatherings delays and disabilities. In addition, the(Mother’s Clubs, Father’s Clubs, Parents’ parent clubs, and parent educationClubs) in the Belarusian Association, seminars and classes are attracting manyECI Centres, and Development Centres. parents who find them rewarding. ForCentre-based activities are favoured parents needing additional support, thegenerally in Belarus and appear to be Belarusian Association provides peereasier to provide. They enable parents counselling and social work assistance.to meet, establish friendships, and MOLSP Family Support Centres worksupport one another and the Centre. in close collaboration with all of theThis camaraderie often has a therapeutic MOH and MOE ECI services providingaffect. Group sessions can represent a counselling, family therapy and referralsway to overcome the social isolation that to essential social services for familiesaffects so many parents with disabled with difficult family situations. A similarchildren. array of services should be developed over time in other countries in the region.Several programmes use home visits toprovide core services. Home visits are 10. Enable strong parent involvementespecially effective in achieving improved in programme services.child development more rapidly because Parents are most involved in MOH ECIparents who learn activities in their homes Centres and the MOE Developmenthave a higher likelihood of doing them Centres, and they expressed the strongestregularly. Visiting nurses of Polyclinics satisfaction with these services. Theyconduct home visits, as do specialists of emphasised that the support they hadECI Centres in Minsk and Kobrin, and the been given had made a major differenceMinsk and Kobrin Development Centres. in their ability to accept their child’sThe Medical Rehabilitation Centres of situation and work well with him orMinsk and Brest and the Development her. They appreciated the respect,Centre of Brest do not conduct home support and guidance they received.visits. ECI and Development Centres The other programmes reviewed arealso make visits to preschools to support mainly expert-driven, and parents areteachers, children and families. In contrast, considered to be patients rather thanspecialists of Psycho-neurological participants. ECI programmes where theyDispensaries, Medical Rehabilitation exist are increasingly focusing on parentCentres, and the Brest Development involvement and satisfaction as a path toCentre stated that they prefer to wait for maximising child development. Belarusparents to come to them. This is typical is slowly improving parent involvementof centre-based services where specialists and satisfaction in its ECI and Specialare not trained to make effective home Education services. The Belarusianvisits and their status comes mainly or Association’s “Families for All Children”solely from playing professional roles in should be greatly expanded to reachCentres rather than from making home more parents through direct servicesvisits. and advocacy messages. The Association is in the vanguard of creating a change8. Develop year-round ECI services. in attitude and behaviours regardingChildren with developmental delays and children with disabilities in Belarus.disabilities require year-round servicesyet MOE Development Centres follow the 11. Develop Interdisciplinary Teams toacademic schedule and many families achieve integrated services.take vacation breaks. However vacation Interdisciplinary Teams are used in ECIbreaks of two or more months can lead Centres, and to a somewhat lesser extent 61
  • 68. in MOE Development Centres. The Specialists require additional training to latter require the presence of additional help parents prepare for transition and specialised medical personnel due to the drafting ITPs. Guidance will be needed requirements of multiple needs children, to ensure parents are prepared to make and Centres such as the Alpha in Kobrin decisions regarding preschool options and Veda in Brest have achieved this and can help their children to transition through partnering with nearby Polyclinics well. More work is needed on follow-up or Medical Rehabilitation Centres. In a and support for children and families way, this is the ideal situation for certain as the children enter regular, inclusive children and their parents who become or separated preschool services. These well known to specialists in both centres. transitions are often more important Joint IFSPs can be prepared and include than the quality of the programmes relevant services from each programme. themselves because a poor transition to Referrals to regional services can also an appropriate preschool or school can be considered. True interdisciplinarity is easily end in poor outcomes for the child difficult to achieve. With the exception and parents. of the ECI Centres, most specialists in other centres still conduct assessments 14. Consider new approaches for pre- alone with the child and sometimes with and in-service training. the parent looking on. Specialists report Professional preparation is fairly results to the IFSP, IDP or IEP group and for uniform across specialisations in the the child’s review by a local Commission fields of education and health.28 Each including parents. Arena assessments, five years they are required to take with the participation of several post-diploma training course. This specialists and the parents together, are system for continuously upgrading rarely found outside of the ECI Centres, professional knowledge is most beneficial and considerable training is required on considering the major organisational how to conduct them. Because children and methodological changes that have require integrated development services, occurred in recent years. The amount it is insufficient to focus only on the area of in-service training in both MOE and of delay or disability. A balanced, holistic MOH centres is striking. Specialists are and integrated approach was found in ECI keenly interested in learning new skills. Centres, and to a lesser degree in the MOE Openness to change was expressed Development Centres. Because medical in each centre visited, along with an services focus mainly on the child’s delay eagerness to share local knowledge or disability, they should routinely also and achievements. The centres have refer children to ECI Centres. created their own in-service training opportunities through reaching out to the 12. Develop guidelines for manage St. Petersburg Early Intervention Institute, learning resources. and to universities and programmes Guidelines for Toy Lending Libraries in Germany, Ireland, Sweden, United should be established to ensure parents Kingdom, and the United States. Now have easy and open access to the that many structural, communications developmental toys they need, with an and coordination matters are well emphasis on toy safety, appropriate use advanced in Belarus, areas for future in the home, and cleaning between uses. international and regional training and Some Centres manage these matters exchange could include topics related to: quite well while others need additional curricula; assessment tools and methods; training and guidance. therapeutic methodologies; and 13. Promote effective transitions to 28 At Pedagogical Universities, five years of inclusive preschool and primary school training is required for all “defectologists” (special services. educators) to receive a Professional Diploma that A great deal of work is needed to clarify will enable them to work in Development Centres, preschools and schools. Graduate degrees that specialists’ and parents’ roles in transition are required for supervisory roles include the from ECI services to inclusive preschools Magistratura (roughly a Master of Science degree) or schools. ECI programmes in several representing two years of additional study, and countries begin to work with parents on the Ph.D. that is an especially but not exclusively transition processes from soon after their research-oriented degree, and requires an children enter the programme. Parents additional three to five years of study. For medical become less psychologically dependent professionals in all developmental areas, six years upon the ECI programme, are increasingly of university study are required, including one informed about their options, and are year of internship and two years of residency. They too may seek a Magistratura and a Ph.D. with empowered to make good decisions. comparable dedications of time to study.62
  • 69. programme evaluation and monitoring. up; and links to child and parent trackingHealth, medical and educational and service provision.specialists expressed interest in learningabout internationally accepted clinical 16. Progressively shift costs from infantmethods for improving child and family homes and other orphanages to thedevelopment. All specialists need training ECI and Special Education System.in interdisciplinarity. Consideration It was impossible to secure completeshould be given to establishing a new costs for programmes. Cost figuresprofession of integrated ECI specialists, are unavailable for ECI Centres andoften called on “Early Interventionists.” Dispensaries or Cabinets becauseTo promote rapid ECI growth, additional their expenses are nested within thespecialists will be needed in the ECI Centre general budgets of Polyclinics but theyof Polyclinic #19 to meet growing service must be much less costly than Medicaldemand, ensure quality is maintained, Rehabilitation Services. They mayrevitalise home visits, and secure release resemble the costs of Developmenttime for training professionals of other Centres where the cost per child perECI Centres. To ensure comprehensive month of services is reported to be fromoutreach services, more trained US $78 to $156 per month or $936 tovolunteers and aides are needed. To $1,872 per year, with the cost varying byprovide home visits in countries lacking the type and location of the Centre. Incertain specialisations, they may want to the Minsk Medical Rehabilitation Centre,train and supervise community ECI home the daily cost of a “bed” per child is USvisitors who will be supervised by early $23 or US $460 per month. The Tonusinterventionists, therapists and special Centre’s cost per day per child was statededucators. to be approximately US $21.7 or $434 per month. These services are intensive15. Improve inter-agency coordination and last from a few weeks to two to threeroles and Commission meetings. months per child.The new agreements of the Belarusian ECIand Special Education System describe The monthly cost of services in six Infantits vertical coordination rules. However, Homes is from US $443 to US $561some of them have not been placed fully per month per child, or an annual costin force, and others appear to require per child from US $5,316 to US $6,732.modification. Directors and specialists MOH ECI and MOE Development Centreseem to be willing to consider changes services, when provided, would add more It is abundantly clearin these regulations. A surprising costs. With a total of 822 children served, that placing childrenamount of important horizontal the total annual cost of serving these in Infant Homes is thecoordination exists between ministries, children in Infant Homes must be in excess highest cost alternative.cities, regions and programmes, and of from US $4,369,752 to US $5,533,704.should be maintained and expanded These high costs (about five times the $1 Children thriveto ensure the ECI system becomes a million dollar annual operating budget and achieve theircontinuous learning community. Internal of a Medical Rehabilitation Centre) could developmental potentialprogramme coordination appears to be gradually be shifted to ECI services best at home. Instrikingly effective. Specialists appear with high-quality parent education and addition, they incur farto keep complete child and family support services that would help parents lower costs to the State,records; however, many of these records keep their children at home. and in line with thecould be simplified and computerised President’s Programmeover time. Each programme has a set As budgets are progressively shifted from for Children they willof internal committees that permit a orphanages to ECI and related services have a better chance ofclear delineation of personnel roles for parent education and support, care becoming productive,and responsibilities. However, systemic must be taken to ensure the transition is fulfilled and emotionallydifficulties were observed regarding well programmed to provide quality care well-balanced citizens.Medical, Pedagogical and Psychological in residential environments as childrenCommissions in several locales. It are gradually transitioned to new fosterappears that they should be reviewed homes or are adopted. At the samewith respect to their purpose, roles and time, personnel need to be continuouslyresponsibilities as well as the roles of trained as they take on new roles andparticipating parents, specialists and responsibilities.agencies. Attention should also be givento: the duration of the meetings; balance 17. Design and implement a results-of specialists participating; contents and based programme evaluation system.methods of the meetings; the roles of The MOE and MOH have institutionalparents and parent empowerment during monitoring systems that includeand after the meetings; meeting follow- quantitative measures regarding family 63
  • 70. circumstances, childbirth outcomes, tend to be highly accountable. However, child status, types and instances of in Belarus, many NGOs have been closed, services, and so forth. However, internal have been unable to secure national and evaluation systems have not yet been international funding or have merged designed for services of the ECI and with public sector programmes, as has Special Education System. It appears been the case with two institutions in this that the existence of many regulations study, the Alpha and Tonus Centres that and effective monitoring systems has began as NGOs. led administrators to believe that quality assurance is in place and evaluation Within the ECI/Special Education system, is unnecessary. When asked about the Belarusian Association of Assistance programme results in terms of child, family to Children and Young People with and community outcomes, directors Disabilities is one of the few NGOs were uniformly unable to provide successful in securing both national and them. Belarus’ ECI system is valuable international support. It plays a series of but it needs both internal and external essential roles, including: home outreach evaluations with rigorous research services; family preservation services; designs to demonstrate its results. An peer support activities for parents; easy-to-use evaluation system should be training workshops; and information designed with instruments (interviews, dissemination. The Association has the observations, surveys, etc.) that utilise, strong support of the MOH and MOE, to the extent possible, existing child and and MOLSP who count on its services. family assessments and supervisory and Its 4,000 members and 64 member monitoring systems. Personnel should groups are spread throughout Belarus. be trained in data collection, analysis, and Its programmes fulfil essential functions, interpretation. ECI programmes in other such as “Families for All Children” that is countries usually allocate from 5% to 12% helping to reduce the incidence of social of their annual budgets to monitoring orphans. and evaluation. 20. Develop research studies on the ECI 18. Develop strategies for programme and Special Education System. advocacy. The Belarusian State University conducted The services of the ECI and Special a useful situation analysis on the status Education System should expand their of children and women in 2004 but joint work to conduct family outreach, additional studies are needed, including: prepare educational materials, and • Rigorous assessments to identify provide social communications through the prevalence of developmental the radio, television and newspapers. delays for specific age bands; Many reported that although progress • Identification of chronic health is slow, family outreach, counselling and problems and disabilities among public education services are helping to infants and young children; build positive public opinion regarding: • Cohort-based experimental the potential of children with disabilities; outcome studies that would the importance of reducing the number measure programme impacts in of social orphans and community support relation to randomized control for keeping children at home; and the groups; provision of services that support families • Case studies using a qualitative, who have children with special needs. life-world and narrative perspective would explore family experiences 19. Provide support for NGOs with the in programme participation, needs ECI and Special Education System. assessments, and service provision; In most countries of the world, NGOs • Detailed reviews of existing human, play essential roles in ECD and ECI institutional, financial and training programmes. Many of them provide resources for children; high-quality programme services, and • Analyses of the impacts of they usually lead the way in programme policies, plans, laws, standards and innovation and materials development. guidelines on ECI programmes; Many NGOs are linked to universities and • Special studies on promoting institutes for research and programme parent involvement and the use of improvement. In most countries, these non-professionals for programme NGOs receive funding from national, outreach and support; regional and municipal governments. • Research on experimental They have to present regular programme therapeutic approaches used in and financial reports, and therefore, they medical rehabilitation to ensure64
  • 71. that they are sound and technically acceptable for use with fragile children; and • Studies on programmes that apply a systems ecological perspective to demonstrate how individual, programme and community outcomes are dependent on organisational factors of the entire service system, including resources, legislation, general beliefs, and cultural norms.By participating in a wide array of researchstudies and learning from their results,ECD and ECI specialists’ should improvetheir knowledge and hone their skills overtime. 65
  • 72. IV.3Recommendations for training,exchange and networking The Belarus ECI and Special Education a. Conceptual approaches for System could help other Russian- fully child-centred and family- speaking countries to learn about and focused services; develop comprehensive services for b. National programme vulnerable children. Many lessons can development, planning and also be learned from the positive policy inter-agency coordination; environment Belarus has developed c. ECI curricula and methods for to maintain, expand and improve the all essential areas, e.g.: health; system. Although these programmes are nutrition; early nurturing still working to improve inter-agency and and stimulation activities; inter-sectoral coordination, significant rehabilitation; protective progress has been made. In fact, few other services; and parent countries in the world have achieved education and support; this level of coordination, exchange and d. Educational materials cooperative training. available for all types of professionals and parents, With respect to ECI services, on conceptual including learning toys, and methodological levels significantly computers as learning tools, more training needs to be provided. The and toy lending libraries; Minsk ECI Centre in Polyclinic 19 offers e. Interdisciplinary Teams and outstanding child-centred and family- methodologies; focused services; however, it needs to f. Child and family assessment expand its staff to achieve fully balanced instruments, methods and Interdisciplinary Teams, and the Centre’s utilisation; specialists are extremely taxed with g. Formats and methods for on-going services and need additional preparing and utilising IFSPs, support to prepare train programmes ITPs, IDPs and IEPs; for specialists who will work in new ECI h. Guidance and methods for Centres throughout Belarus. providing home visits and centre-based services; Given this situation, we recommend the i. Programme monitoring following steps be taken: and evaluation instruments, 1. Design a national and systems and databases and international training systems for continuous programme. Build a close programme planning and collaboration with the St. revision; Petersburg Early Intervention j. NGO roles and responsibili- Institute and key Belarusian ties in conducting and sup- institutions to design, prepare porting ECI services; and hold national and regional k. Financial planning, training sessions for countries that budgeting, accountability, decide to develop ECI services. and quality assurance; and l. Communications media 2. Develop training manuals usage to build programme and materials. Before training advocacy. begins, general and specialised training manuals should be 3. Provide training programmes. prepared, field-tested, revised Selected partner countries and produced for each national could be invited to send programme regarding topics teams of specialists to training such as: programmes in Belarus, with a66
  • 73. focus on the ECI programmes of Early Childhood Care and Development, Minsk and Kobrin. the International Step by Step Association (ISSA), and other international groups. 4. Hold training workshops in St. Petersburg. Selected training workshops also should be conducted at the St. Petersburg Institute. The Institute’s experienced specialists are highly skilled trainers. They consider the provision of training services for other programmes and countries to be a part of their core mission. 5. Follow-up supervision, monitoring, and evaluation. Initial and continuous training for ECI services is essential, but to ensure that new programmes in other countries will be designed for sustainability and will go to scale, follow-up supervision, monitoring and external evaluation will be required. 6. Exchanges. The best way to learn concepts is to participate in teaching them, including the exchange of studies and educational materials. Programmes for the “training of trainers” and networking will be needed in each country until stable organisation structures are established.In addition, it would be important to planahead and anticipate the developmentof inter-site exchange with Russianand Belarusian specialists visiting otherRussian-speaking countries and viceversa. It is generally agreed that the bestform of in-service training is inter-siteexchange visits. As national focal pointsfor ECI services are developed in othercountries, it will be essential to developa horizontal network uniting new ECIprogrammes and existing ones to createa continuous learning community.As a result of these regional ECI trainingand programme development activities,it is expected that regional resourcenetworks of professionals and parentswill be established, grow and thrive. Thisnew generation of leaders will inspireothers to continue this work to helpALL children achieve their potential.It will also be important to establishprofessional linkages between this newnetwork and the International Society onEarly Intervention (ISEI), the EuropeanAgency for Development in Special NeedsEducation, the Consultative Group for 67
  • 74. 68
  • 75. PART V:Guidelines for Establishing ECI Services 69
  • 76. V.1 IntroductionThis section provides general guidelines continuously trained and supportedregarding core concepts, structures, to help their children to achieve theirprocesses, and methodologies for potential. Where services are lacking,establishing effective ECI services that are communities and public, civil society andrights-based, child-centred, and family- private programmes should join togetherfocused. The bibliography at the end of with parents to develop new services inthis document provides helpful resources accordance with parents’ evolving needs.for specialists in countries that plan todevelop ECI systems and programmes. The following Guidelines do not constitute a detailed programme design. Rather,The conceptual and methodological their goal is to help colleagues in manyGuidelines for ECI services, presented countries consider the ECI approach,below, feature an integrated educational, outline policy strategies, and prepare ansocial, health and nutritional approach, ECI Plan of Action.in contrast to a mainly medical orrehabilitation approach. Rather than National Ministries of Finance andconsidering children with high-risk status, Planning should be involved from thedevelopmental delays or disabilities as outset. Early childhood leaders andhaving deficits, defects or illnesses, this planners from all levels should considerapproach emphasises their competencies, their options in light of the human resourcestrengths and developmental potential. and institutional realities they face. EachECI programmes seek to overcome country is profoundly different, and childfunctional limitations, if present, and development and parent programmesthey maximise children’s development must be well knit into national cultures.and their participation in home and Countries should be encouraged tocommunity activities, with an eye provide rights-based services and achieveto helping them achieve long-term national development goals throughindependence and opportunities to increasing their investments in children ECI services representcontribute to society. Children with and families. far more than aillnesses or other medical or nutritional new organisationalconditions should, of course, receive framework.appropriate health and rehabilitative They signal profoundservices. The ECI approach embraces changes in ways ofsuch rehabilitation services as a part, but thinking about: childrenonly a part, of children’s Individualised and how to maximiseFamily Service Plan. their potential; parental rights andTo implement ECI programmes, an empowerment;ecological and community-based and professionalapproach should be taken wherein competencies and rolesa range of community services for in supporting parentseducation, health, and protection work and children.in concert to ensure maximum supportfor children and families. Communitiesshould take leadership in ensuring allchildren’s services are well coordinatedand share the goals of: maintainingchildren in nurturing homes; identifyingeach child with special needs or high-risk circumstances early; providingcontinuous and intensive ECI services;and collaborating to ensure parents are 71
  • 77. V.2ECI Guidelines Ultimately, early childhood planners extensive health care, protective should seek to serve ALL of the children services, welfare services, and and parents in their countries. On the long-term residential care. path to universal services, research results 6. All ECI services should be have shown that it is essential to reach consistently child-centred and the most vulnerable children on a priority family-focused. basis. Research on brain development, 7. ECI services must develop formal developmental delays and disabilities systems of coordination with all have demonstrated that early intervention collaborating educational, health, for infants and toddlers (from conception nutritional, social and protective and birth to three years of age) is the most services in order to ensure child- important period for ensuring good child centred and family-focused development. Therefore, throughout the services will become permanent. world, ECI programmes begin with early 8. Options and trade-offs for intervention services for children from programme services should be birth to age three. Services are provided carefully considered with regard in homes and in centres, and always with to: mapping and targeting the active participation of parents. This vulnerable populations of early period is usually complemented children and parents; cost- or followed by inclusive preschool effectiveness; and maximising education, from approximately age three service coverage and quality. until school entry. ECI services should 9. The following attributes of quality continue until the child enters inclusive ECI services are emphasised: preschool or primary education services. availability, proximity, affordability In some cases, children with multiple or and diversity. (See European severe disabilities will need the continuing Agency for Development in assistance of special education teachers Special Needs Education 2005) and therapists to complement school activities. V.2.2 Range of services V.2.1 Basic principles ECI programmes often contain a wide range of services, for example: 1. ECI services are a child and human • Comprehensive Infant and right. child assessments conducted 2. ECI services should be designed by an Inter-disciplinary Team from the outset to go to scale in (minimum of quarterly during each country. the first two years). 3. They should be comprehensive, • Early nurturing and child coordinated, inter-disciplinary, development services, multi-sectoral/multi-agency, including all developmental culturally competent, and fully areas using a rich curriculum equitable. and interactive demonstration 4. ECI services should be conducted and practice methods. with parents and preschool • Psychological support for educators in order to maximise parents and family members, child development through from identification onward, consistent nurturing care and with family counselling as activities at home, and in centres needed. and preschools. • Parent education and support, 5. Involving parents also reduces both individualised and in future costs by reducing the need small peer groups. for special education services,72
  • 78. • Individualised family and child service plans prepared by parents as a part of the Inter- disciplinary Team.• Referrals and active support for securing essential health, medical, rehabilitation, nutritional, social and protective services, as needed.• Play groups for children and parents under three years of age.• Inclusive preschools for children two and one-half or three years of age and older.• Transition programmes for parents, children, teachers and other school staff to prepare for entry into inclusive primary schools.• Respite care for children to enable parents to work, relax or take a vacation.• Financial support for parents living in poverty to help them keep the child at home and cover additional care expenses a child with special needs requires.• Support groups for siblings and other family members (grandparents, etc.).• Short-term foster parents, carefully selected and trained, as needed.• For working parents, extended day care including developmentally appropriate activities, feeding and other services.• Adaptive equipment and toys for developmentally appropriate play.• Special equipment for transportation and help with transport, as needed.• Centre-based community education activities to help develop shared attitudes regarding ECI, special education and inclusive preschool and school services. 73
  • 79. V.3Guidelines ChartThe following Guidelines provide an overview of key elements of an ECI system. Main Activities Guidance Comments Strategic Planning Develop the conceptual Establish the normative basis for a rights- Consult widely, nationally and internationally framework for an ECI based ECI Programme. to ensure programme norms fit child and programme. family needs. Use CRC and other international covenants and declarations as a basis for national commitment. Develop policy support. Insert the ECI approach into current Place ECI services in an ECD policy, an ECD policies. If the country lacks policy, Education, Health Plan or Protective Services structure a process for developing one. Policy or Plan. Secure legislative support Establish ECI programme’s legal basis, Place ECI services in national laws or a and establish standards and national standards and guidelines to Children’s Code with enough specificity to guidelines. ensure sustainability and scale. Local allow the system of justice to rule on key issues programmes can set more detailed for children and families, as needed. Ensure standards and guidelines meeting that standards include a process for oversight, expectations but enabling culturally review and accountability. competent services. Develop a National ECI Attach National ECI Technical Committee Include representatives of all key public sector, Technical Council or to a National ECD Council and sectoral civil society and private sector agencies, Committee. bodies. Specify roles, responsibilities vis a parents of typically developing and high-risk, vis public agencies, NGOs, ECI programmes, delayed and disabled children, and community and communities. leaders. Establish provincial and Coordinate and network provincial, Ensure both vertical (top/down and bottom/ municipal and/or community municipal and/or community committees up) and horizontal coordination at each level: ECI Committees. with all other child and family services. national, provincial and municipal/community. Structure annual planning Link annual planning to evaluation, Clear rules for roles and responsibilities at each processes for ECI services at monitoring, feedback and budgetary level should be developed and monitored each level. processes. frequently to ensure programme compliance and accountability. Initial Design Activities Conduct a baseline Situation Include in Situation Analysis: Conduct studies before designing the ECI Analysis and correlated * Identify prevailing child and family needs services. studies. in all areas; * Survey institutional, human, financial Use baseline data for evaluation and and training resources for ECI services; monitoring and for the long-term longitudinal * Analyse relevant policies, plans, codes, analysis of programme cohorts. laws, standards, guidelines, etc.74
  • 80. Define and establish criteria Prepare a flexible but clear definition that Definition includes children:and guidelines regarding the ensures all vulnerable children, including *At biological or socio-economic risk of delay;types of children and parents high-risk and developmentally delayed *Assessed to have a mild, moderate or severethat should be targeted for children and their parents, will eligible to delay;priority attention through ECI be served. *Assessed with one or more developmentalservices within the country’s disabilities;array of ECD services. *Diagnosed to have a chronic illness or disease; *Diagnosed as malnourished.State service coverage goals Specify clearly the populations, types To achieve social equity, it is essential thatin terms of populations and of families and children who should be under-served populations be given specialgeography. served. Identify and map rates of children attention for receiving ECI services. Ensure with high-risk status, developmental service goals are consistent with the results of delays (all levels) and disabilities. the mapping process.Design ECI programme to be Ensure ECI services fit the culture and When ECI programmes are not culturallyfully culturally competent. its positive child rearing ideals. National competent, it is essential to develop a strategic programmes should ensure the language plan for ensuring all of the essential elements of the home is used. To the extent possible, are put into place over time. specialists and community educators should belong to the community or culture. Materials should be easy for parents to read and use.Design a comprehensive Ensure all children will be identified, Computer-based databases for child andtracking and follow-up assessed and tracked. family tracking as well as program monitoringsystem. and evaluation should be prepared.Programme Organisation and Inter-institutional RelationshipsDecide upon the best Consider the institutional location with Often the education sector is selected toadministrative and sectoral strongest political and policy support for ensure a seamless transition from initial zero tohome(s) for ECI services. the ECI programme. three ECI services to inclusive preschools and primary schools. Sometimes the health sector Sometimes, as in Belarus, two homes are is selected because it has essential therapists, selected. Both the education and health physicians and primary health care services. sectors lead ECI services, with strong The institutional home should have strong support from protective services. linkages with education, health, nutrition, protective, justice and sanitation services.Develop a system for the *Use health system resources Different countries will emphasise a health,lead agency to ensure quality *Use educational system resources education or social service base but in eachservice provision. *Provide direct services from the lead case, other agencies should participate and agency as well as contract services from coordinate their services as seamlessly as NGOs, private providers and others. possible.Select local service providers Structure ECI services to be located close Families encounter difficulties in travelling farwith care and ensure they are to families and to other social services to access services. A combination of home-located close to the families families use to promote close coordination. based and centre-based services may bethey will serve. needed. Competition between services should be avoided and coordination emphasised.Develop partnerships with Create partnerships at local, regional and Some ECI-related services fear partnerships butNGOs to ensure all available national levels because it is rarely possible systems that have developed them have foundservices are mobilised to for one service centre to include all basic that their services grow and develop better.support ECI services. ECI services.Decide upon the financing Seek support from national, regional Options regarding parents:system(s). and municipal governments, 1. A sliding scale is used, based on family cooperatives, insurance systems, non- income and assets with free services for families profit organisations, parents and others. living in poverty. Consider establishing taxes on payrolls, 2. Free services are provided for all parents. property, extractive industries, businesses, 3. Parents volunteer to work for the programme. and others. 75
  • 81. Develop a system of inter- Establish formal inter-agency agreements Policies, legislation and Councils can establishagency agreements. at all levels. Each community should formal agreements. Less formal agreements develop agreements to ensure can be developed through building networks comprehensive services are provided. and partnerships.Training ActivitiesDevelop a national Training Locate it in the lead agency or another In some countries, training is distributedand Resource Centre or agreed upon agency. among university, sectoral training systemssystem for developing and Roles: To ensure programme quality or inter-sectoral collaborations. However, tosupporting ECI services. through training and resource ensure coordination, it is advisable to have one development: assessments; contents; main centre, if possible. materials; methods; media; monitoring and evaluation.Establish standards for pre- Develop national standards for Encourage all relevant disciplines to includeservice training. professional training as well as training coursework on ECI concepts, activities and early interventionists, and the pre-service methods. Prepare ECI early interventionists training of community paraprofessionals with training in several disciplines. Training for and other support staff. paraprofessionals should give credits that can be used later for professional training.Develop standards and Ensure programme standards, guidelines, Curricula and educational materials should beguidelines for educational curricula, manuals and media are designed, enriched and developmentally appropriate.and health contents, field-tested, revised, implemented, and Programme manuals should cover allincluding: curricula, continuously evaluated by programme programme processes and training activities.educational materials and parents and personnel. Handouts and booklets for parents needmanuals, and media for the appropriate visuals for parents with limitedprogramme. reading skills.Establish schedules for *Ensure all programme personnel receive Training should include topics such as:regular in-service training a minimum of 100 - 200 hours annually of management of inter-disciplinary teams;and re-certification. formal in-service training. refresher seminars and mentoring in special * Encourage the development of a re- fields; assessments; child-centred contents and certification programme with on-site methods; transition programmes; methods mentoring each two to four years. Given for enabling parent involvement and support; rapid developments in the field re- recent research results on child development certification is essential. and neuroscience; new curricula, materials and *Combine regular less formal in-service methods; coordination methods; and problem- meetings with reviews of family and child solving approaches. situations, monitoring, supervision, and other functional activities.Develop a system of Provide a personnel scale or ladder for In addition, community support and provisionincentives, including training upward mobility and salary incentives of awards for programme personnel is a strongopportunities, to ensure staff commensurate with performance. incentive to expand and improve services overretention and motivation. timeProgramme ImplementationConduct comprehensive Early identification is essential. Ensure Develop community outreach and advocacyprogramme outreach, children who are identified to be low in plans. Consider using visiting nurses,information and advocacy birth weight, victims of domestic abuse, community educators, school personnel, homeservices to inform all families social violence (war), substance abuse, etc. visitors or social workers. Give attention toand identify, enrol and ensure will be assessed and addressed by the ECI rural and urban poor, and ethnic and linguisticconsistent services are programme. minorities.provided at the appropriatelevel of intensity.76
  • 82. Provide comprehensive Personnel should include: Emphasise providing services essential toservices, ensure a range * Family and parent educators avoiding residential placement of children.of specialists is available * Early interventionists Promote parent leadership and familyto supervise and provide * Physical therapists empowerment. Ensure the full range ofservices, and use trained * Speech/language therapists therapists is available to train and superviseparaprofessionals to expand * Audiologists early interventionists and paraprofessionalservice coverage. * Occupational therapists home visitors to reduce costs, expand coverage * Special educators and maximise programme impact. * Psychologists * Social workers * Special child care specialists for day-long ECI programmes * Preschool educators trained in inclusion * Programme evaluatorsDevelop Inter-disciplinary Empowered parents and the main Co-responsibility and planning with parents is aTeams (IT). disciplines should be represented on each hallmark of a well-functioning ECI programme. IT for each child and family, with a focus on ITs usually have early interventionists and from the areas of greatest child or family need. 4 to 8 disciplines, depending upon need and availability.Establish and reinforce Educate parents about their rights and Place large reminder posters on walls forchild and family rights and responsibilities at the outset and during parents about child and family rights andresponsibilities, as well as each phase of programme services. Ensure confidentiality. Provide handouts andconfidentiality. all programme documents are confidential parents’ booklets on their rights, roles and and establish programme rules regarding responsibilities. confidentiality.Conduct initial and Ensure parents actively participate in all Schedule assessments at the beginning andfrequent continuing child assessments and state their observations. according to a regular schedule to meet eachassessments. child and family’s needs.Prepare Individualised Family Develop a flexible form and methods Ensure the IFSP includes assessment results,Service Plans (IFSP) for each for planning and drafting IFSPs. Ensure parent observations, a review of child andchild with the participation of that parents have co-responsibility and family competencies, strengths and needs,parents and Interdisciplinary the lead in decision-making in all aspects service priorities, goals and objectives,Teams. of programme activities including the activities for each area of developmental to development of each IFSP. ensure balanced development and attention to special needs.Implement the Track all children identified for assessments Computer-based databases for child and familycomprehensive tracking and to ensure they receive appropriate services tracking are essential. Continued vigilancefollow-up system. and outcomes are evaluated. is necessary to assess high-risk yet typically developing children.Provide ECI services of the Identify children whose developmental The complete process of identification, inter-appropriate intensity and goals require intensive services (daily/ disciplinary assessment, IFSP preparationduration. weekly) and ensure services until and goal setting, programme activities and assessments reveal they may move to less continuous regular reassessment should be intensive (biweekly/monthly) services. viewed within the continuum of services from Once gains are consolidated, services intensive to less intensive and occasional may be reduced with continuing parent services. education and support.Ensure that each child who Design continuous services from infancy Policy advocacy may be required to ensureneeds continuing services to preschool or school entry to ensure programme services are continuous,has a seamless transition services for children who continue to have guaranteed, well financed and appropriate forbetween ECI services and high-risk status, delays or disabilities. each child and family.preschool or school services.Prepare transition plans Prepare, in collaboration with inclusive With parents and representatives of inclusiveand plans for continuing preschools and schools, formats and preschools and schools, develop ITPs and IEPsspecial education services methods for drafting Individualised and also encourage preschool and primaryin inclusive preschools and Transition Plans (ITPs) and Individualised school teachers and resource personnel to visitschools. Education Plans (IEPs) for transitioning to the child and parents in the ECI programme inclusive preschools and later inclusive and their home. schools. 77
  • 83. Programme Evaluation and Monitoring Combine supervision with Ensure supervisors monitor performance By combining supervision, monitoring and monitoring and in-service and provide in-service training for teachers in-service training, efficiency is improved and training. of preschools and schools. costs are minimised. Implement continuous Conduct both internal and external Parents should participate in evaluation internal and external evaluations. Non-programme personnel activities including: programme inputs, evaluation systems. should conduct external evaluations. processes, outputs and outcomes. Develop a database for Ensure continuous analysis of data to Develop programme and community boards continuous programme provide feedback to annual programme trained to use monitoring and evaluation feedback and planning. and financial planning. reports for planning. Implement a system of Ensure parents, boards and community Establish regular annual schedules for programme management representatives are involved in programme managerial reviews and oversight activities. and continuous parental and management and oversight. community oversight.On the basis of these Guidelines, ECD leaders and specialists from public, civil society and private institutions shoulddraft a National Strategic Plan of Action. (See Vargas-Barón 2005 for general guidance for preparing ECD Policiesand Strategic Plans.)Questions and comments are welcomed regarding these guidelines for structuring comprehensive ECI systemslinked to all other early childhood services. Nations of the CEE/CIS region are poised to develop ECI systems, andonce implemented, they will benefit millions of young children and parents.78
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  • 88. Wolfendale, Sheila. (1997). Meeting SpecialNeeds in the Early Years: Directions in Policy andPractice. London: David Fulton Publishers.Ytterhus, Borgunn (2000). “De minste vil, og fårdet kanskje til” – en studie av hverdagslivetssegregering I integrerede institutioner –barnehager. Trondheim: NTNU; Institutt forsosiologi og statsvitenskap. [”The small oneswant to, and maybe they manage” – a studyof the segregating everyday life in integratedinstitutions – kindergartens. In Norwegian.]Zafeirakou, Aigli (2006). Providing Access toEducation and Care for all Young Children0 to 7: Early Childhood Care and Educationin South East Europe: Progress, Challenges,New Orientations. Alexandroupolis, Greece:UNESCO.Zinchenko, Irina. (2007). Research onDisability Status. (Analysis of legislation andspecial educational provisions in the RussianFederation). Report from TACIS project “JoiningEfforts to Create Inclusive Kindergartens”.Zinkin, Pam and Helen McConachie, editors.(1995). Disabled Children and DevelopingCountries. London, United Kingdom: MacKeith Press. 83
  • 89. 84
  • 90. Annex I List of AcronymsARD Admission, Review and Dismissal CommitteeCEE.CIS Central and Eastern Europe and Commonwealth of Independent StatesCRC Convention on the Rights of the ChildDS Down SyndromeECI Early Childhood InterventionECD Early Childhood DevelopmentECCD Early Childhood Care and DevelopmentECE Early Childhood EducationECCE Early Childhood Care and EducationGDP Gross Domestic ProductGNP Gross National ProductIBFAN International Baby Food Action NetworkIDP Individual Development PlanIEP Individualised Education ProgrammeIFSP Individualised Family Service PlanISSA International Step by Step AssociationIT Inter-disciplinary TeamITP Individualised Transition PlanITT Individualised Transition TeamMICS Multiple Indicator Cluster SurveysMOE Ministry of EducationMOF Ministry of FinanceMOH Ministry of HealthMOLSP Ministry of Labour and Social ProtectionNIE National Institute of Education, BelarusNGO Non-Governmental OrganisationOT Occupational TherapyPALS Peer-Assisted Learning SystemPP Para-professionalPPP Positive Parenting ProgrammePT Physical TherapySC Service CoordinatorSEAC Special Education Advisory CommitteeS/LT Speech/Language Therapist (sometimes referred to as Therapist)TOT Training of trainersUNICEF United Nations Children’s FundWHO World Health Organisation 85
  • 91. Annex IIOfficial Belarusian ECI Documents:Main Inter-agency Agreements,Regulations and Guidelines The documents listed below have 8. Ministry of Education, Resolution been placed on a CD ROM that may be No. 33: On approval of the obtained from the UNICEF Country Office Instruction on the Procedure of Belarus. of Identifying Children with Disabilities/Special Needs, 7 April 1. Law of the Republic of Belarus 2006. on Education of Persons with 9. Primary Record Format for the Disabilities (Special Education), 7 Instruction on the Procedure and 29 April 2004. of Identifying Children with 2. Resolution of the Ministry of Disabilities/Special Needs. Education, Introducing alterations 10. Ministry of Health, Regulation and additions to the Tentative on Early Intervention Cabinet Regulations on the Correction (Department) as a structural and Development Training and division of polyclinics. Rehabilitation Centre. 20 January 2005. 3. Annexes 1, 2, 3 and 4 to the Regulations on the Correction and Development Training and Rehabilitation Centre: Child Examination Record (Year One of Life; Year One to Three; Preschool Child; Year 6 to 18) by the Psychological/Medical/ Pedagogical Panel. 4. Annex 5 to the Regulations on the Correction and Development Training and Rehabilitation Centre: Opinion of the Correction and Development Training and Rehabilitation Centre (region, town, district). 5. Annex 6 to the Regulations on the Correction and Development Training and Rehabilitation Centre: Parental consent to the opinion of the Correction and Development Training and Rehabilitation Centre (region, town, district). 6. Ministry of Education, Resolution No. 85: Approving the Instruction on Procedure of Establishing and Functioning of Special Classes (Groups) and Integrated (Joint) Education/Training Classes (Groups), 28 August 2006. 7. Annex to the Instruction on Procedure (above): Individual Psychological and Pedagogical Monitoring Card.86
  • 92. Annex III Map of the Republic of Belarus and Main IndicatorsPopulation: 9,714 million (1.01.2007)Population below 18 years: 1,868 million (1.01.2007)Infant Mortality Rate: 5,2 per 1000 (2006)Under 5 Mortality Rate: 7,2 per 1000 (2006)Literacy: 99%Maternal Mortality Ratio: 10 per 100,000 live births (2005)One-year-olds immunised against DPT3: (100%) 1999One-year-olds immunised against measles: (100%) 1999Children with special needs below 18: 125,981 or 6,74% (15.09.2006)Preschool attendance: 80,3% (2006) 87
  • 93. Locations visited by researchers in red Emily Vargas-Barón & Ulf Janson with Natalia Mufel Early Childhood Intervention, Special Education and Inclusion: A Focus on Belarus Printed and bound in Belarus «Altiora – Live Colours» Circulation 700 copies; order 7136.88
  • 94. In countries of the CEE/CIS region, well over a million children live in institutions. Many ofthese children were abandoned at birth and a large proportion of them have disabilities. In factdisability is one of the most frequent causes of abandonment. Institutionalisation depriveschildren of a family environment and most often, especially in the case of very young children, hasa VERY negative impact on their development. The General Comment No. 7 on the UN Conventionon the Rights of the child states that “young children should never be institutionalized solely onthe grounds of disability. It is a priority to ensure that they have equal opportunities to participatefully in education and community life, including by the removal of barriers that impede the reali-sation of their rights.” This study takes an in-depth look at how Belarus is moving along the path of providing inclu-sive, child-centred and family-focused services to address the needs and rights of children withDEVELOPMENTAL DELAYS AND disabilities. In many cases, Early Childhood Intervention (ECI)services, which arguably need to be expanded to cover more and more children, are working tomake early diagnoses and remediate existing or emerging DELAYS AND disabilities in conjunctionwith and respecting the rights of parents and children. The study discusses the “defectological”tradition, extant in most countries of the CEE/CIS region, which although evolving and changing,tends to focus on “correcting deficits.” Modern, scientific approaches, the study emphasises, char-acterise the children as capable of learning and FOCUS ON their competencies. Two very talented and experienced child development and special needs professionals, Dr.Emily Vargas-Barón and Prof. Ulf Janson were responsible for conducting this study. They wereassisted in their endeavours by Natalia Mufel, a Belarusian psychologist, working with UNICEF.Together the team visited examples of different services for special needs children in Belarus,conducted interviews, made observations, and profiled the services based on criteria such asparental participation, interdisciplinarity, and flexibility. The authors make a number of importantrecommendations towards aligning services even more closely with child rights principles. Theyalso provide a set of practical guidelines that can assist other countries in the region tore-examine and transform their services for children with special needs. It is hoped that this informative document will benefit health, education and welfare profes-sionals and decision makers, and that its rich insights will help spur the necessary changes thatwill lead to better protecting the dignity and rights of children with special needs and their families.

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