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 SchwethelmUNICEF CEECIS Regional Office

Content1. 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

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

0 1 4 8 12 16AGE

SensingPathways

(vision, hearing)

LanguageHigherCognitive Function

3 6 9-3-6Months Years

C. Nelson, in From Neurons to Neighborhoods, 2000

Conc

e ptio

nSensitive/critical periods

Critical/sensitive periods during which certain types of stimulation must be received

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 disabilitiesProtection from

violence, maltreatment and abuse

Promotive, preventive and curative health

care & adequate and appropriate nutrition

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

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.

Continuum of Health Care

Health promotion -> Prevention -> Early Intervention

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…..

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

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

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

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

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)

Availability of Child ECI Specialists (Urban Areas)

Pediatric

Neurogis

t

Developmental

Pediatric

ian

Child Psyc

hologist

ECI S

pecialist

Infant m

ental healt

h specia

lists

Pediatric

physiotherap

ist

Child la

nguag

e therap

ist

05

10152025

SufficientInsufficientNot at all

c. ECI Mapping - Skills of Doctors (1)

Id. biological.-develop-mental risk Assess social emotional risk

(mat. depression) Assess comprehensive child development Use standardized tools

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Few

Some

Many

Most

Skills of doctors (2)

Use standardized methods to assess malnutrition

Assess for suspicion of autism during first 3 years

Assess for visual deficiency

0

5

10

15

20

25

Number of Countries/Entities Providing Services to Most (>75%) Young Children and Mothers

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 enhancing development

Identification of intra-family violence

0 2 4 6 8 10 12 14 16(23 countries/entities)

Services for One-Year Old with Down Syndrome

White: services not available * countries/entities in random order

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

Services for 6-months old with severely depressed mother

White: services not available * Countries/entities in random order

Likelihood of Institutional Placement by Condition

*Countries/entities in random order

ECI mapping - Service Delivery Approach

Services provided in home

Services provided to the individual

Services provided in groups

Caregiver present

Caregiver not present

Family-centered

Child-centered

0 2 4 6 8 10 12 14 16 18 20

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

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

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

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…)

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

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)

Thank you!

Contact:Bettina Schwethelmbschwethelm@unicef.org