Primary care and home visiting services for early identification and support for young children with developmental difficulties and/or disabilities – what is available and what is needed in CEE/CIS? From 4th Child Protection Forum in Tajikistan, 2013.

1. Primary care and home visiting services for early
identification and support for young children with
developmental difficulties and/or disabilities –
What is available and what is needed in CEE/CIS?
Dushanbe, August 1, 2013
Bettina Schwethelm
UNICEF CEECIS Regional Office

2. Content
1. The Critical Window of
opportunity
2. The role of the health sector
in
promotion, prevention, and
early intervention
3. Mapping ECI services for
children with disabilities &
developmental difficulties in
CEE/CIS
4. UNICEF’s work to strengthen
the health sector for ECI

3. 1. Maximizing the Critical Window of
Opportunity for every child
• Every child is born with potential
• Overwhelming evidence from neuro-science
and development research about what young
children need “survive and thrive”
• Critical development during pregnancy and
the first 1000 days of life
– Sensitive periods of development
– Depriving environments significantly affect
vulnerable children

4. 0 1 4 8 12 16
AGE
Sensing
Pathways
(vision, hearing)
Language
Higher
Cognitive Function
3 6 9-3-6
Months Years
C. Nelson, in From Neurons to Neighborhoods, 2000
Sensitive/critical periods
Critical/sensitive periods during which certain types of stimulation must be received

5. 5
EARLY
RELATIONSHIPS
HEALTH
&
NUTRITION
FAMILY
SUPPORT
PROTECTION
&
INCLUSION
Predictable, responsive
and affectionate care;
secure bonding and
attachment; interaction
and communication
Access to child health and
development knowledge
and information
Child care services
Family and child benefits
Early detection and
intervention for delays
and disabilities
Protection from
violence, maltreatment
and abuse
Promotive, preventive
and curative health
care & adequate and
appropriate nutrition

6. The Health Sector - A Part of the
Problem?
• More newborns are surviving, but only
gradual improvements in perinatal/neonatal
care and lack of community-based services
• Providers continue to recommend and
promote the move of newborns with medical
conditions and/or disabilities to institutional
settings
• Insufficient outreach to the more vulnerable
groups for prevention and care due to
pervasive stigma and discrimination
• Low level of reporting of abuse and neglect
with severe consequences for development
and lifelong wellbeing
• Low attention to maternal depression and
other parental disabilities

7. 2. Why Target the Health Sector?
Health Sector Advantage
• Health workers often
trusted
• Use of services not
stigmatizing
• Continuum of care
allows for
development of
relationship of trust
and entry into family
micro-environment
Coverage Central Asia
(range)
At least 1 prenatal visit 96-99%
Measles vaccine 97-99%
Hospital delivery 88-100%
Health sector home
visiting systems
5 countries
WHO definition of health as "a state of complete physical, mental
and social well-being and not merely the absence of disease or
infirmity” requires a much broader role for the health sector.

8. Continuum of Health Care
Health promotion -> Prevention -> Early Intervention

9. Examples of Health Promotion
• Promotion of healthy lifestyle
(exercise, rest, smoking and
alcohol cessation, good
nutrition) during pregnancy
• Birth preparedness &
parenting information
• Provision of age-
appropriate parenting
advice
– Information about child
developmental needs
– Information on common
parenting issues
(feeding, crying, toileting
, discipline…)
– Injury prevention
education…..

10. Examples of Prevention
“The most effective interventions are often those that are preventative
instead of reactive”
• Folic acid to prevent neural tube defect
(also iodine and iron deficiency)
• Social workers in maternities to reduce
abandonment/relinquishment in vulnerable
women
• Breastfeeding, kangaroo care/skin-to-skin
for low birth weight infants for bonding and
development
• Social-emotional counseling/ support for
mothers/parents experiencing depression
• Birthing/parent education to support
nurturing parent-child relationship
• Counseling in responsive feeding

11. Examples of Early Intervention
• Early interventions for infants
with very low birth weight,
congenital conditions,
disabilities and for young
children with delays
– Counseling and support to
caregivers, developmental
surveillance, re/habilitation
services, referral
– Hearing, vision, and child
development services
• Early interventions for children
and families experiencing
abuse, neglect, mental health
problems, or other adversities
– Counseling, referral, treatment,
involvement of child and social
protection services

12. 3. Mapping of Early (0-3 years) Identification
and Intervention Services in CEE/CIS
• All countries/entities in CEE/CIS participated
• Approach based on global WHO study with 32
LMICs
• Focus on health sector
• Key informant approach (1-2 per country)
• 37 respondents -- 28 medical doctors (13
pediatricians) and 9 professionals from other
disciplines

13. a. ECI Mapping study - Policy environment
• 14/23 countries/entities have laws that mandate
access to early intervention services
• Most laws recent
(between 2004 – 2011)
• 12 countries/entities
have tools to classify
developmental disorders
and disabilities

14. b. ECI Mapping study - Access
• Basic health services accessible in 21
countries/entities
• Sufficient doctors and nurses in 17
countries/entities
• Health Sector home visiting in 20
countries/entities (social services: 7)
• > 75% of young children routinely
visited in their home in 14 countries
• Home visiting for special groups in 10
countries (e.g., Roma)
• Continuity of care is essential for
children with disabilities and delays –
but likelihood of seeing the same
provider is less for chronic conditions
(which includes disabilities)

15. Availability of Child ECI Specialists (Urban Areas)
0
10
20
30
Sufficient
Insufficient
Not at all

18. Number of Countries/Entities Providing Services to
Most (>75%) Young Children and Mothers
0 2 4 6 8 10 12 14 16
Folic acid during pregnancy
Prenatal screening for Down syndrome
Ultrasound for neural tube
Screening of neonate for PKU
Screening of neonate for hypothyroidism
Developmental surveillance
Developmental screening
Counseling during home visit on…
Identification of intra-family violence
(23 countries/entities)

19. Services for One-Year Old with Down
Syndrome
White: services not available * countries/entities in random order

20. Services for six-month old, born
prematurely, birth weight 1400 grams, poor
weight gain, mild spasticity, not vocalizing
White: services not available * Countries/entities in random order

21. Services for 6-months old with severely
depressed mother
White: services not available * Countries/entities in random order

22. Likelihood of Institutional Placement by Condition
*Countries/entities in random order

23. ECI mapping - Service Delivery Approach
0 5 10 15 20
Services provided in home
Services provided to the individual
Services provided in groups
Caregiver present
Caregiver not present
Family-centered
Child-centered

24. Conclusion from ECI Mapping Study and other
Assessments
• Medical model and defectology approach are changing slowly
• Information about young children with disabilities and delays
remains limited
– Outdated classification systems
– Role of role of social determinants (poverty, ethnicity…) and family
needs not addressed
• Lack of trained professionals
• Low use of evidence-based approaches for
promotion, prevention, and intervention
• Low use of evidence-based screening and diagnostic tools
• Lack of community-based services for early intervention in most
countries
• Limited understanding of the critical importance of early
intervention

25. 4. HEALTH AND WELLBEING FOR YOUNG
CHILDREN - UNICEF CEE/CIS APPROACHES
• Multi-sectoral focus
• Regional agreement on key
approaches, strategies, and
results indicators based on best
available evidence
• Regional support to development
of advocacy tools, human
capacity building in
ECD/ECI, research to generate a
regional evidence base, and M&E
• A shared web-based platform for
collaboration centering on young
child wellbeing (including ECI)
and health promotion

26. Focus on Early Identification and
Intervention
• Disseminate knowledge about
ECI and child wellbeing
• Promote professionalization of
ECI services (“export of Turkey
DPU approach”, ECD/ECI skills
building)
• Strengthen universal and
enhanced home visiting services
for promotion, prevention and
early identification

27. Home Visiting – The Global Evidence
Home visiting can contribute to
improved:
• Parental wellbeing (affect spacing
of pregnancies, maternal
health, maternal
depression, substance abuse)
• Parenting skills and behaviours
(e.g., breastfeeding/ responsive
feeding, nurturing responsiveness
to infant, less harsh
discipline, stimulating & safer
home environment…)
• Child outcomes
(health, nutrition, and vaccination;
infant
sociability, exploration, cognitive
growth, executive function…)

28. Home Visiting Activities (2012 – 2015)
• Country assessments (9 completed)
• International Expert Group
• Development of home visiting policy
guidance with focus on vulnerable groups
(young children with disabilities/
developmental difficulties)
• Regional training package for home
visiting personnel with focus on early child
development and developmental
difficulties
• Tool kit to enhance screening and
developmental monitoring capacities
• Innovation projects and research

29. The first 3 years of a child's life are a time when a child has the greatest
plasticity for growth and development, even under adverse circumstances.
The health sector therefore has a unique responsibility, because it has the
greatest reach to children and their families during pregnancy, birth, and
early childhood. Universal health coverage provides the platform to
achieve impact in a fair, integrated, and efficient way. …
By ensuring that all children have the best first chance in life, we can help
individuals and their communities to realise their maximum
potential, thereby expanding equality and opportunity for all.
(M. Chan, Director General, WHO, 2013)

30. Thank you!
Contact:
Bettina Schwethelm
bschwethelm@unicef.org