Children with a Disability: Beyond Functioning to Participating in Life

1. Children with a Disability: Beyond Functioning to Participating in Life Susana Gavidia-Payne, Ph.D. IFCW World Forum for Child Welfare 18 – 21 October, 2011 Melbourne, Australia

2. Overview • Children with disability around the world • Contemporary views of disability • What are the current challenges to theparticipation of children with a disability? • Can we begin addressing these challenges…and how? • Conclusions

3. Children with Disability Around the World • Global Burden of Disease(2004): • Number of children aged 0–14 years: moderate or severe • disability: 93 million (5.1%); Severe: with 13 million (0.7%). • UNICEF (2005): • Number of children with disabilities under age 18: 150 million. • Low- and middle-income countries: child disability prevalence • from 0.4% to 12.7% depending on the study and assessment • tool (103). • Approximately 200 million children under age 5 fail to reach • their potential in cognitive and social-emotional development.

4. Contemporary Views of Disability: Concepts • ICF-CY (WHO, 2007)- “bio-psycho-social model; • Moving away from clinical diagnosis; • Disability: • Understanding ‘risk and vulnerability’:Not • inevitabledisability. Participation restrictions Impairment Activity limitations

5. Disability: Risk Factors

6. Other Risk Factors…Around the World… (World Report on Disability, 2011) • Children under age 5 : • to come from poorer households; • to face discrimination and restricted access to • social services, including early-child­hood • education; • to be underweight and have stunted growth; • to be subject to severe physical punishment from • their parents.

7. Disability: Steps Forward • Increased emphasis on the participation of children • with disabilities; • Move away from sole focus on IQ measurement and • cognition; • Increased focus on: • Children’s strengths • Socio-emotional development and relationships • Families and caregivers • Natural learning environments

8. A need to create a positive narrative for children with disabilities.

9. Children and Families: Their Challenges • Great degree of disadvantage (social, psychological, • educational, financial); • Families of children with disabilities • Many roles; • Combining employment and care; • Caregivers and overall families’ physical and • mentalhealth.

10. Other Challenges: Policies and Practices • Inconsistent policies and practices; • Models of support and service delivery focusing on: • Children and family deficits • One size fits all • The service and immediate need: Rigid boundaries • Under resourced.

11. OtherChallenges: Research • Research gaps • No available data • Unsuitable research designs • Data thatfails to be translated into effective • practice

12. Addressing the Challenges… • Identification of risk for developmental delay/disability early inlife; • Examining and establishing effective service pathways; *Project Families in Partnership (Victoria, Australia)* • Articulating the meaning of competencies and capacity for both children and their families.

13. Addressing the Challenges… • (cont.) • Departure from traditional models of ‘treatment and • intervention’; • Broadening intervention and program outcomes for • children and families • Participation outcomes • Developmental pathways

14. ...And How • Are we going to roll-up our sleeves or limp on?(Friedman, 2011); • True to our values; • Change • System-wide • Organisation-based • Community-based • Taking the risk, being innovative and transformative;

15. ...and more • Engaging in good organisational and professional • practice; • What is the ‘extra’? • Conducting more and different research-globally and locally; • Translating research into practice.

16. Conclusion • Progress has been made; • There is still much to be done; • Rethinking childhood with disability; • Rethinking policies, service delivery, practices, and research.

17. Thank you Susana Gavidia-Payne susana.gavidia-payne@rmit.edu.au (03) 9925-7710