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

– 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).

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

Examples

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

institutionalization)

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

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

Maternity Hospitals

(screenings)

ppChildren Hospitals

(NICU, etc.)

Children Polyclinics(screenings)

SpecializedMedical Centers:Medical-Genetic

AudiologyOphtalmology

Rehabilitation Centers

Early childhood Intervention

(NGO, Health care, Education, Social care)

Mainstream Preschools(screenings)

Special Preschools

Social Centers

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

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

Health and development (Correlation between young child with Down syndrome

development and seizures )

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

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

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

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.