Children and disability in transition in CEE/CIS and Baltic States

CONTENTS

Foreword. v
Introduction ix
The CEE/CIS Region: A Snapshot  x

Chapter 1: Official Facts and Figures 1
1.1 MAIN FINDINGS  2
1.2 DEFINITIONS, CONCEPTS AND APPROACHES IN CEE/CIS 2
1.3 RATES OF DISABILITY AMONG CHILDREN IN CEE/CIS  4
1.4 DISABILITY AND HEALTH IN CEE/CIS8
1.5 INSTITUTIONS AND SPECIAL SCHOOLS FOR CHILDREN WITH DISABILITIES 14
1.6 POVERTY AND RAISING CHILDREN WITH DISABILITIES IN FAMILIES  23
1.7 AVAILABILITY OF BENEFITS AND DISABILITY SUPPORTS 26

CHAPTER 2: A Professional Opinion 31
2.1 MAIN FINDINGS  31
2.2 METHODOLOGY 33
2.3 HEALTH CARE SERVICES 34
2.4 EDUCATION, CARE REGIMES AND DISABILITY SUPPORTS 39

CHAPTER 3:Voices of Children and Parents  47
3.1 METHODOLOGY  47
3.2 FAMILY CARE  48
3.3 INSTITUTIONAL CARE  50
3.4 HEALTH AND WELFARE SERVICES 50
3.5 EDUCATION 52
3.6 RECREATION AND LEISURE  54
3.7 THE DISABLING PHYSICAL ENVIRONMENT  54
3.8 THE RIGHTS OF CHILDREN WITH DISABILITIES 55
3.9 PROGRESS AND THE FUTURE  55

CHAPTER 4:The Way Forward  59

BOXES
Box I Naming and defining disability xvii
Box 1.1 New WHO classification focuses on functioning 2
Box 1.2 Disability screen 5
Box 1.3 The children of Chernobyl  9
Box 1.4 Efforts to control rubella and measles in Kyrgyzstan  14
Box 1.5 Giving up: Why families surrender children with disabilities to institutions  15
Box 1.6 The ‘special needs’ of schools for children with disabilities in Turkmenistan  17
Box 1.7 Poverty risk among families raising a child with disabilities  24
Box 1.8 Improving access to community-based care 28

Box 2.1 EACD guiding principles for disability supports and services  32
Box 2.2 A professional prescription for managing disability 36
Box 2.3 Defectology: Theory, Practice and Potential  39
Box 2.4 Therapies made in CEE/CIS  40
Box 2.5 Out and about: Breaking down physical barriers  43
Box 2.6 Key role for parents’ groups and NGOs  44
Box 2.7 Positive initiatives in CEE and CIS countries 45

Box 3.1 Reaching parents  54
Box 3.2 Laws and National Mechanisms 55

Box 4.1 Experimental survey tool for capturing lived experience 60
Box 4.2 A model for turning institutions into community-based support systems 61
Box 4.3 ‘House of Mother and Child Development Initiatives’ in Kyrgyzstan  62

FIGURES
Figure I: Political map of CEE and CIS region x
Figure II No. of children with disabilities in institutions or receiving cash benefits in CEE/CIS, 2002 xiv
Figure III Number of registered disabled children in 11 countries, 1990-2002  xiv
Figure IV Infant mortality rates in CEE and CIS countries: Official and survey estimates  xiv
Figure V Number of disabled children in public institutional care, 1990 and 2002  xv

Figure 1.1 Disabled population and people in need of daily personal assistance by age, Estonia, 2000  5
Figure 1.2 Rates of infant mortality and congenital anomaly, Czech Republic, 1970-2002  6
Figure 1.3 Rates of congenital anomaly and infant mortality in 15 CEE and CIS countries 2002 7
Figure 1.4 Perinatal mortality rates in 33 European and Central Asian nations, 1989 and 2001 8
Figure 1.5 Child disability by cause in Ukraine, 1992-93 and 2000-2001  9
Figure 1.6 Percentage of women at full-term pregnancy with anaemia, 1989-2001  12
Figure 1.7 Stunting and under-5 mortality rates in CIS and Asian countries, late 1990s 12
Figure 1.8 Enrolment in basic special education programmes, 1989 and 2001 19
Figure 1.9 No. of children with disabilities in special schools and integrated education in Lithuania  21
Figure 1.10 Basic special education in Poland  21
Figure 1.11 Special education enrolment by grades in Russia, 1989-2002 22
Figure 1.12 Per cent of households with consumption expenditure under national poverty lines 25
Figure 1.13 Disability pension compared to average wages in 14 countries 27

TABLES
Table I Human development indicators in CEE and CIS countries, 2001  xi
Table 1.1 No. of registered children with disabilities in 11 CEE and CIS countries  6
Table 1.2 Child disability prevalence by disease group in Latvia, 1994-2001 10
Table 1.3 Morbidity among children by disease group in Belarus, 1990 and 2001  11
Table 1.4 Measles, rubella and hepatitis incidence in CEE and CIS countries, 1989 to 2002 13
Table 1.5 Number of children with disabilities in CEE/CIS in public institutions, 1990 – 2002 16
Table 1.6 Education enrolment and labour force status, disabled and total, Estonia  23
Table 2.1 Schedule of health check-ups for children in Turkmenistan, 2002 35

MODELS
Model 1 A family centre for children with disabilities 61