This document discusses early intervention for children with disabilities in Russia and the CIS region. It outlines the following key points: - Children with disabilities have a right to health care without discrimination under the UN Convention on the Rights of Persons with Disabilities. Early intervention is important to support development and inclusion. - Early intervention aims to normalize life for the child and family, help parents create an optimal environment, and prevent institutionalization. It involves interdisciplinary teamwork, family support, information/legal support, social inclusion, and transitions between services. - There is a shift from a "defectological" approach that focuses on correcting defects, to a family-centered early childhood intervention approach based on child and family

1. Fulfilling the role of health sector to ensure
the rights of children with disabilities to a
high standard of health and wellbeing care
Experiences of developing Early Intervention in
Russia and CIS region
Elena Kozhevnikova
St. Petersburg Early Intervention Institute,
Russian Federation

2. – Article 25 of the United Nations Convention on the Rights of Persons
with Disabilities (CRPD) reinforces the right of persons with
disabilities to attain the highest standard of health care, without
discrimination.
– Children with disabilities (art. 23). Young children should never be
institutionalized solely on the grounds of disability. It is a priority to
ensure that they have equal opportunities to participate fully in
education and community life… Young disabled children are entitled
to appropriate specialist assistance, including support for their
parents… Disabled children should at all times be treated with dignity
and in ways that encourage their self-reliance (Implementing children
rights in early childhood, General Comment № 7 to Convention on
children rights, 2005).

3. Early childhood and disability –
scientific background
• Early experience and brain development
• Infant as a self-actor vs. passive object of care
• Early cognitive development – “scientist in the crib”
• Interaction and communication with loving caregiver
(communication vs. ‘conditioning’)
• Early relationships, attachment theory, infant mental health
• Brain plasticity, sensitive periods

4. Examples
• Sensitive periods – infants with hearing loss
• Brain plasticity – infants with brain damage
• Early relationships – infants in infant homes (damage of early
institutionalization)

5. Early detection:
All “healthy” infants and young children:
• Auditory screening
• Visual screening
• Developmental screening
• Screening for Autistic Spectrum Disorders
It can be done:
• at health care facilities (maternity hospitals, children polyclinics, etc.)
• by parents (information and questionnaires for parents)
Screening ---------- referral to ------- Assessment

6. Special groups of children:
I. Infants and young children biologically at risk
(VLBW infants, infants at NICU)
Preventive/prophylactic early intervention program:
- At children hospital
- Follow up – monitoring of child development + consultations
and psychological support to parents
II. Infants and young children with established
disabilities (infants with Down syndrome, with Spina bifida,
children with CP etc.):
- changing attitudes of health care professionals +
- interdisciplinary early childhood intervention program

7. Maternity
Hospitals
(screenings)
pp
Children
Hospitals
(NICU, etc.)
Children
Polyclinics
(screenings)
Specialized
Medical Centers:
Medical-Genetic
Audiology
Ophtalmology
Rehabilitation
Centers
Early childhood
Intervention
(NGO, Health care,
Education, Social care)
Mainstream
Preschools
(screenings)
Special
Preschools
Social
Centers

10. Goals of early childhood intervention
• In a global context:
• to “normalize” life of the child and family
• to help parents to create optimal environment for
infant/young child development and education
• Specific for Russia and some other CIS countries:
• to prevent infant and young children institutionalization
• to change attitudes of health care professionals towards
children with disabilities

11. Main components of early childhood
intervention
• Interdisciplinary teamwork with families and children
• Psychological support to families
• Information and legal support to families
• Social inclusion of families and children
• Transition to preschool
• Support to inclusive preschool education
• Transition to school

16. Health and development
(Correlation between young child with Down syndrome
development and seizures )

17. Differences in
ECI approach
• To “normalize” life of the
child and the family
• Family centered
• Parents as partners
• Child as an individual
• Program is based on
strengths of the child and
family
Defectological approach
• To cure or correct defects
and “normalize” the child
• Child focused
• Parents as obstacles or
patients
• Child as a category /type
of defect
• Program is based on
weaknesses of the child

18. Challenges in moving from ‘defectological’
to ECI approach:
• Strong tradition of ‘medical’ model of disability, belief
that medical diagnosis completely predicts development
• Tradition to divide children into ‘educable’ and
‘uneducable’, into ‘high and low level groups’ based on
potential for rehabilitation
• Belief that only professionals can help children, lack of
respect and trust in family’s abilities
• Narrow specialization of rehabilitative and correctional
educational services according child diagnosis
• Lack of knowledge of early childhood development and
education in PT, OT, AAC methods

19. Early detection, prevention and social inclusion
of young children with disabilities –
how to make it real
I. Through legislation (USA, Portugal, Spain, etc.)
II. Through interdepartmental cooperation
III. Through decentralization of services
• Cities
• Rural areas – community based early intervention
programs (good practice of Tajikistan)
IV. Through education and changing attitudes of
professionals
V. Through information exchange and changing
attitudes of parents

20. EII as a knowledge center in early childhood
intervention
• Support to regional and municipal authorities in
developing ECI programs
• Education of interdisciplinary ECI teams
• Education in screening and assessment methods
(infants and young children development, vision,
hearing), physical therapy, occupational therapy, early
communication, Alternative and Augmentative
Communication, early childhood special education, infant
mental health, family work, inclusive preschool education
etc.