Including Children with Disabilities in Early Child Development Programmes Dr. Aisha K Yousafzai 23 May 2006 Human Development Programme Aga Khan University

2 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.

3 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)

4 Causes Helander, 1992

5 Consequences 1.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).

6 “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.”

7 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 3 rd 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).

8 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.

9 Current strategies addressing the needs of disabled children Models of services –Community Based Rehabilitation –Early Child Development programmes – Hospital based development and neurology services

10 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.

11 Measuring outcomes beyond child survival- A primary goal CountryAnnual BirthsInfant mortality rate (per 1000 live births) Under 5 mortality rate (per 1000 live births) India Nigeria China Pakistan DR of Congo Ethiopia Olusanya, 2005; UNICEF, 2004.

12 Developing a systematic evidence base for community based disability services CBR Studies published (n 128), Finkenflügel et al (2005) CBR Studies published (n 128), Finkenflügel et al (2005)

13 Levels of interventions for prevention, rehabilitation and care of developmental delay and disability StrategyGoal* Level PrimaryReduce incidence Universal, Selected SecondaryReduce prevalence Universal, Selected & Indicated TertiaryReduce sequelae Indicated Simeonsson, 2004; 1991

14 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.

15 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.

16 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.

17 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.

18 International Policy Documents Standard Rules (UN, 1993) Salamanca Statement (UNESCO, 1994) UN Convention for the Rights of Persons with Disability (in process)

19 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

20 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).

21 Interactions: ICF Framework

22 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

23 People who need to be involved ImpairmentActivityParticipationContextual Disabled person **** Family *** Community **

24 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.