Including Children with Disabilities in Early Child Development

Programmes

Dr. Aisha K Yousafzai

23 May 2006

Human Development ProgrammeAga Khan University

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Overview

• Prevalence, causes and consequences of disability.

• Current strategies for addressing the needs of disabled children.

• Tools for moving forward in developing strategies to include disabled children in ECD services.

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Prevalence

• Estimated global prevalence of all moderate-severe impairment is 5.2%:– 7.7% High income countries– 4.5% Low income countries

• 335 million people with moderate-severe impairment globally.

• 200 million children at risk of disability before 19yrs.

(Groce, 2003; Helander, 1992)

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Causes

18%

16%

23%

26%

17% Congenital

Mental

CommunicablediseasesNon-communicablediseasesTrauma

Helander, 1992

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Consequences1. Delayed diagnosis & lack of rehabilitation services (Olusanya,

2005)

• Children with mild-moderate disabilities often remain unidentified until of school age.

• Rehabilitation services are limited; e.g. India 1 rehabilitation for every 375 children with CP (Desmond, 2003).

2. Lack of knowledge about disability

• Families invest a lot of time and money in seeking curative treatments (Yousafzai, 2001).

• Lower social participation of families with disabled children (Samson-Fung et al. 2002).

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“It is harder for my child [to integrate] because she does not speak, but she does play.”

“When his foot is better, it will be better, but if he does not get better, then what? So we have to find

what we can do to make it better quickly.”

“To send my child [with physical disabilities] to school is hard. I think he will get more sick and we will worry how the others will

treat him.”

“A man hit my son because he thought my son was behaving rudely, but my son cannot speak and he may have been trying to get

attention.”

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3. Negative childhood experiences: isolation, abuse, violence, prejudice

• Abuse is up to 80% among children with learning impairments (Groce, in press).

4. Access to and quality of education

• 1-2% of disabled children have access to formal education (DFID, 2000).

• Quality of education is of concern; e.g. the average reading standard of a deaf high school graduate is the equivalent of a 3rd grade.

5. Vulnerability to malnutrition and poor health status (Khan et al, 1998)

• Feeding difficulties associated with malnutrition identified in up to many children with cerebral palsy (Sullivan, 2002).

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Overview

• Prevalence, causes and consequences of disability.

• Current strategies for addressing the needs of disabled children.

• Tools for moving forward in developing strategies to include disabled children in services.

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Current strategies addressing the needs of disabled children

• Models of services

– Community Based Rehabilitation

– Early Child Development programmes

– Hospital based development and neurology services

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• Current limitation:– Implementation, replication and coverage of

disability strategies remains poor.

• Moving forward:– Move towards global indicators to define

child well being in to different levels of interventions.

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Measuring outcomes beyond child survival- A primary goal

Country Annual Births Infant mortality rate (per 1000 live births)

Under 5 mortality rate (per 1000 live births)

India 25221000 67 93

Nigeria 4764000 110 183

China 18857000 31 39

Pakistan 5415000 83 107

DR of Congo 2594000 129 205

Ethiopia 2948000 114 171

Olusanya, 2005; UNICEF, 2004.

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Developing a systematic evidence base for community based disability services

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31

116

43

105

101520253035404550

Intervention

Descriptive

Case

Review

s

Theory

Other

%

CBR Studies published 1978-2002 (n 128), FinkenflCBR Studies published 1978-2002 (n 128), Finkenflügel et al ügel et al (2005)(2005)

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Levels of interventions for prevention, rehabilitation and care of developmental delay and disability

Strategy Goal * Level

Primary Reduce incidence

Universal, Selected

Secondary Reduce prevalence

Universal, Selected & Indicated

Tertiary Reduce sequelae

Indicated

Simeonsson, 2004; 1991

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Universal Level

• Identification of risk factors associated with impairments and disability:– E.g. Maternal status, Nutrition status, Socio-demographic

factors (indicators of extreme poverty, literacy), Environmental hazards (Durkin et al, 2000; 1998).

• Possible Programmes: Improving maternal nutrition, supporting families in extreme poverty, female literacy programmes.

• Identification of effective interventions through monitoring the impact of programmes on prevalence/severity of impairments is needed.

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Selected Level

• Identification of children with disability requires certain pre-conditions:

– An understanding of the local beliefs, perceptions & concerns about developmental delays and disability (Groce, 1999).

– Access to appropriate interventions, e.g. information and support services, ECD programmes.

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Indicated Level

• Goal:– Optimising health and development.– Rehabilitation, reducing the impact of disability,

preventing secondary conditions, improve opportunity, supporting families.

• Programmes:– E.g. Provision of information and support to families,

formation of parent groups, training of community workers, advocacy, access to health and education services, social integration, inclusion.

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Overview

• Prevalence, causes and consequences of disability.

• Current strategies for addressing the needs of disabled children.

• Tools for moving forward in developing strategies to include disabled children in services.

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International Policy Documents

• Standard Rules (UN, 1993)

• Salamanca Statement (UNESCO, 1994)

• UN Convention for the Rights of Persons with Disability (in process)

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10 Questions Screen (Zamen et al.1991)

• Identifies through parental reporting major impairments: physical, visual, hearing, communication, learning, epilepsy

• Validated in Bangladesh, Pakistan and Jamaica

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International classification of functioning, disability and health (WHO, 2001).

• The ICF represents a biopsychosocial approach and attempts to integrate all models of disability.

• The ICF takes into account the broad spectrum of definitions around health and disability.

• 2 components:– Functioning (body structures & functions) and

disability (activities & participation).– Contextual Factors (Environmental and personal

factors).

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Interactions: ICF Framework

http://www3.who.int/icf/icftemplate.cfm

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ICF as a tool…

• Multi purpose classification tool providing a scientific basis for looking at health related states, outcomes and determinants. It serves as a reminder of wide collaboration of stakeholders providing input for the child and family. It can be used as a:– Statistical tool– Intervention planning– Research tool– Clinical tool– Social policy tool– Educational tool

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People who need to be involved

Impairment Activity Participation Contextual

Disabled person * * * *Family

* * *Community

* *

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Summary

• Improving development outcome is the right of ALL children.

• Sufficient evidence highlights the additional difficulties disabled children experience.

• The inclusion of disabled children can only be achieved through active efforts.

• Existing ECD strategies provide a pathway for addressing the needs of disabled children.