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Collaboration between Health and Educational Systems to Improve the Inclusion of Children

with Special Needs in Schools

First International Developmental Pediatrics CongressDecember 2-5, 2015

Sabanci Center, 4. Levent, Istanbul, Turkey

Olaf Kraus de Camargo, MD, PhD; Nezihe Elik, PhD;

Heidi M. Feldman, MD, PhD; Z. Hande Sart, PhD

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Prologue“Disability is a difficulty in functioning at the body, person, or societal levels, in one or more life domains, as experiences by an individual with a health condition in interaction with contextual factors” (Leonardi et al., 2006)“The test of the morality of a society is what it does for its children” (Dietrich Bonhoeffer, 1906 - 1945)

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Outline• The United Nations Convention on the

Rights of Persons with Disabilities • Practice of Inclusion in Canada

• Current Challenges in Canada• Practice of Inclusion in Turkey

• Current Challenges in Turkey• Lessons Learned from Canada, Turkey, and

the U.S.A. and our Vision

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Convention on the Rights of Persons with Disabilities (adopted 2006)

Art 24.2: In realizing this right, States Parties shall ensure that:

a) Persons with disabilities are not excluded from the general education system on the basis of disability, and that children with disabilities are not excluded from free and compulsory primary education, or from secondary education, on the basis of disability;

b) Persons with disabilities can access an inclusive, quality and free primary education and secondary education on an equal basis with others in the communities in which they live;

c) Reasonable accommodation of the individual’s requirements is provided;

d) Persons with disabilities receive the support required, within the general education system, to facilitate their effective education;

e) Effective individualized support measures are provided in environments that maximize academic and social development, consistent with the goal of full inclusion.

http://www.un.org/disabilities/convention/conventionfull.shtml

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Convention on the Rights of Persons with Disabilities

Convention and the Optional Protocol: signing the protocol means that the state parties agree to be examined by a UN committee if concerns about the implementation of the convention arise.

Canada:• signed convention in 30-03-2007, ratified convention in 11-03-2010, • did not sign or ratify the optional protocolTurkey:• signed convention in 30-03-2007, ratified convention in 28-09-2009, • signed the optional protocol in 28-09-2009, ratified the protocol in 26-

03-2015United States of America:• signed convention in 30-07-2009, did not ratify the convention• did not sign or ratify the optional protocol

http://www.un.org/disabilities/countries.asp?navid=17&pid=166

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Inclusion in Canada (Ontario)• The Education Act requires school boards to provide in accordance with

the regulations special education programs and special education services for its exceptional pupils. Specific procedures for the identification and placement of exceptional pupils are set out in Regulation 181/98. (www.edu.gov.on.ca/eng/).

• Various associations (e.g., www.ldao.ca) advocate for children with disabilities and special needs.

• Example: A supreme court ruling on a case (2013) supported the rights of people for special education in the public education system, and decided that schools cannot ask students to go to a private special school because they have severe needs (http://www.ldao.ca/educational-implications-of-recent-supreme-court-ruling/).

• Inclusion of students in education system requires flexibility because children with disabilities have diverse needs. Schools should have special education services, with the goal to integrate the child into regular education classrooms for all or part of the curriculum.

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Challenges in Canada• discontinuity of services between home and school environment

• diagnosis and IQ-based access to services creates tension between clinic and school

• personal supports (educational assistants) driven by potential of liability instead of needs

(e.g., Philpott, 2007)

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“in-between-the-chairs”Parents

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Overcoming Challenges in Canada

• consultation from developmental pediatricians and psychologists to schools directly and indirectly (team members go to schools): advocating for child’s needs by explaining the needs (not necessarily diagnosis) to parents and teachers

• working with the team members (therapists) who go to home and school settings to implement interventions

• empowering parents and making them more active in collaborating with school and in utilizing community resources

• providing assessments and recommendations to be utilized at home and at school, with continued follow up

• intervention research studies that aim at supporting teachers in classrooms (e.g. Teacher Help for ADHD (http://www.researchgate.net/publication/281713389_Web-Based_Intervention_for_Teachers_of_Elementary_Students_With_ADHD, CanChild - https://www.canchild.ca)

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Inclusion in Turkey• the policies are similar to Canadian educational act,

with a slightly different language in that the inclusion practices in regular classrooms are described as “desirable” but there are items that indicate that if this is not possible then the child could be deemed not possible to receive education in a regular classroom, rather, they would need to be in a special education classroom or special education school, or even at home (e.g., Item 27) (http://mevzuat.meb.gov.tr/html/26184_0.html)

• although collaboration with other professionals (outside of the school) are mentioned, it appears that special education teachers and guidance counselors are the main consultants to teachers

• medical and educational diagnoses for eligibility for “treatment” in schools

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Challenges in Turkey• special education classrooms and schools

are utilized and preferred by parents more widely than ideal (Sakiz et al., 2015)

• guidance counselors’ educational background

• studies show negative attitudes and limited knowledge toward inclusion of children with disabilities (Bayram et al., 2015)

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Overcoming Challenges in Turkey

• there has been an initiative to support inclusion practices: http://gazetesu.sabanciuniv.edu/sites/gazetesu.sabanciuniv.edu/files/engellilikraporu.02.04.13.pdf

• researchers are documenting the need for supporting regular education teachers (in terms of their knowledge, attitudes, materials, family engagement) to include children with special needs (Sakiz, 2014)

• developing In-service Training for Inclusive Classroom Practices (DISTINC) is a European Union project; http://distinc.org

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Lessons LearnedCollaborative team approach within the hospital, but also by including teachers, parents and home-based therapists in helping the child (it takes a village to raise a child)

Family-centred approaches and overcoming barriers for both parents and teachers by increased communication of these barriers

Specialists and diagnosticians have to relay their knowledge of the child and recommendations in person, not only through a report

Increased early assessment services will set the child in the right track and early intervention will be more effective (response to intervention)

Increased communication between researchers, clinicians, and school staff to have interventions done by researchers (to overcome budget cuts)

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Vision for the FutureSystem level: legislation to ensure that services are provided based on needs (International Classification of Functioning, Disability and Health, WHO) – See “Redesigning Healthcare for Children with Disabilities” by Heidi M. Feldman

International collaboration and knowledge translation

Clinical and School Level: Collaborative approach with participation of all persons involved with the child, listening to the persons with disabilities (http://machealth.ca/programs/curriculum_of_caring/m)

Desired Outcome: A supportive and individualized approach to learning and development for all children, based on their needs, leading to full inclusion.

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Biopsychosocial Model

Religious groups

Bronfenbrenner (1979)

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Collaborative Approaches

Parents

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Epilogue“If you treat an individual as he is, he will remain how he is. But if you treat him as if he were what he ought to be and could be, he will become what he ought to be and could be. (Johann Wolfgang von Goethe)“Kids do well if they can” (Green, 2014)

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References• Bayram, G. I., Corlu, M. S., Aydin, E., Ortactepe, D., & Alapala, B. (2015). An

exploratory study of visually impaired students' perceptions of inclusive mathematics education. British Journal of Visual Impairment, 33(3), 212-219. doi: 10.1177/0264619615591865.

• Green, R. (2014). Lost at school: Why our kids with behavioral challenges are falling through the cracks and how we can help them. New York, NY: Scribner.

• Leonardi, M., Bickenbach, J., Ustun, T. B., Kostanjsek, N., Chatterji, S., & Consortium, M. (2006). The definition of disability: what is in a name? Lancet, 368(9543), 1219–1221. http://doi.org/10.1016/S0140-6736(06)69498-1

• Philpott, D. F. (2007). Assessing without labels: Culturally defined inclusive education. Exceptionality Education Canada, 17(3), 3-34. Retrieved from http://search.proquest.com/docview/622140457?accountid=12347

• Sakiz, H., Sart, Z. H., Borkan, B., Korkmaz, B., & Babur, N. (2015). Quality of life of children with learning disabilities: A comparison of self-reports and proxy reports. Learning Disabilities Research & Practice, 30(3), 114-126.

• Sakız, H. & Woods, C. (2014). From thinking to practice: school staff views on disability inclusion in Turkey. European Journal of Special Needs Education, 29(2), 135-152. doi:10.1080/08856257.2014.882058.

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Thank you!