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9.1 Children and young people experiencing disability

Legislation and provision: Article 61 of the Constitution states that “The State shall take measures to protect the disabled and secure their integration into community life”. Turkey is also a party to the UN Convention on the Rights of Persons with Disabilities, which sets out the rights of disabled persons in detail (http://www.un.org/disabilities/default.asp?navid=14&pid=150). Article 7 of the Convention states that state parties should take all necessary measures to ensure the full enjoyment by children with disabilities of all human rights and fundamental freedoms on an equal basis with other children. Parliament ratified the Convention in December 2008. Accordingly, Turkey is obliged to report periodically to the UN Committee on the Rights of Persons with Disabilities on measures taken to uphold the rights of disabled persons and progress made in this regard. In addition, Turkey has signed, but not ratified, the optional protocol to the Convention, which permits citizens to contact the UN Committee directly if they feel they have been victims of a violation of the Convention.

Legislation on services for children with disabilities was first passed in 1997. This legislation was updated in 2005, through Law No. 5378, making special education and rehabilitation services available for children with or without health insurance, and providing for the provision of such services by the private sector, subsidised by the state. In practice, the education and health systems provide for children, young people and other persons with disabilities in various ways. Very significant provision is available in some cases - such as life-long medical expenses for some severe congenital conditions resulting in disabilities. Meanwhile public offices and large workplaces are obliged to employ a certain proportion of disabled persons. The Ninth National Development Plan foresees that “Social and physical environmental conditions will be improved to increase the participation of the disabled in the economic and social life. In this regard, special education opportunities and protective work places, where the working environment is organized accordingly, will be developed.” In 2011, the national government department for the disabled, the Disability Administration (Özida) was included in the new Ministry for the Family and Social Policies along with the Directorate General for Social Services and the Child Protection Agency and the Social Assistance and Solidarity General Directorate. Accordingly, a single ministry is now responsible for the various social services for disabled persons and their families – such as home and residential care for disabled persons and Care, Rehabilitation and Family Counselling Centres in most provinces - and for social assistance, which includes assistance for disabled persons and carers. One of the five general directorates of the Ministry is the Directorate General for Services for the Disabled and the Aged. This restructuring has given disabled persons including children a stronger champion in government and raised the profile of social assistance and services for the disabled. Turkey is currently participating in the International Inspiration project, linked to the 2012 Olympic and Paralympic Games, which aims to use high quality and inclusive physical education, sport and play to enrich the lives of children and young people including those facing disability.

Outstandıng issues: Despite these favourable factors, provision for the disabled - whether in social services and assistance or in other sectors - may not be adequate or may not reach children and adolescents with all kinds of disability everywhere. Moreover, the avowed goal of integrating the disabled into the community (e.g.: through home care and mixed schooling) may not be sufficiently attained. One problem is with the certification of persons with disabilities, including children and young people, so that they and their families can be provided with assistance, services and care. Screening for some conditions is routinely carried out at birth, but children with less severe forms of disability or developmental delay may be diagnosed late or not at all, due to insufficient capacity of primary health care providers in this area. The standard Disability Form/Report is only notionally based on the International Classification of Functioning (ICF), is categorical rather than functionally oriented, and has not been designed for children.

Identifying development delays

With the rapid decline in under-five mortality, it is likely that a significant proportion of the extra children who are surviving infancy are under high biological risk for developmental delays. UNICEF, WHO and other international organizations recognize that developmental difficulties in children are a leading cause of morbidity and impose economic and social burdens on families, countries and societies. As in other high and middle income countries, approximately 15% of all young children in Turkey are thought to have a developmental difficulty that places them at risk of suboptimal functioning or disability.

The health care system includes preventive efforts targeting, for example, iron and iodine deficiencies and screening for metabolic and endocrine disorders. However, these are uncoordinated and non-comprehensive, and the methods used may be out of date. Moreover, health care staff are not routinely trained for developmental surveillance and are not equipped with information on the management of cases that are identified.

The diagnosis of disabilities does not follow a comprehensive “medical home” model, and developmentally based, functional assessments that include family-centered approaches and issues related to activities and participation are not in use. The current standard diagnostic framework International Classification of Functioning Children and Youth (ICF-CY, WHO 2007) is also rarely used. Following diagnosis, many children are given centre-based, professional-driven special education and rehabilitation based on out-dated behaviour-modification techniques. Families are rarely included and empowered by the training. Waiting lists for diagnoses particularly for cognitive and mental health problems are extensive and may delay children and families as long as six months.

Nevertheless, pioneering work is being carried out to detect disabilities and developmental difficulties at an early age and respond to them. Development paediatrics has been acknowledged as a sub-specalisation in the medical system, and development paediatric units, initially piloted by Ankara University, have been established in the seven largest hospitals, with the provision of corresponding training.  These units seek to identify and address outstanding or emerging health issues through comprehensive, innovative and holistic approaches. This work needs to be expanded and fully integrated into the health care system.

In education, official policy is to mainstream but despite improvements children with disabilities may still not be integrated into the education system to the maximum extent possible, for reasons including poverty and physical access issues, a measure of continuing separation within the education system, and low parental and societal expectations. Most children identified as having special educational needs (76,204 children in the 2009-10 academic year) are educated alongside their peers – although teachers may need more training and support. Others (15,712 in the 2009-10 academic year) are educated in special education classes in regular schools and about 26,000 attend special education schools or are educated in special education classes within primary education schools (Education Reform Initiative (ERG): Türkiye’de Kaynaştirma/Bütünleştirme Yoluyla Eğitimin Durumu [Situation of Education through Mainstreaming/Inclusion in Turkey], and Ministry of National Education Formal Education Statistics. See also section 6 of this Situation Analysis, on education). Data on the numbers of disabled children attending special education schools is not disaggregated by age. Another issue raised from time to time is the quality of care of the mentally disabled in institutions, which serve both adults and children.

Issues of physical access raise serious problems for disabled persons of all ages, especially in crowded and chaotic urban areas. This issue is one of those clearly raised in the Turkstat survey on “Difficulties and Expectations of Disabled Population” in 2010. In 2005, a deadline of 2012 was set for public buildings and public transport to meet certain standards in respect of access for the disabled, but the deadline was later postponed until 2013 after it appeared unlikely to be met in most cases.

Social norms and attitudes: Social norms and the attitudes and limited knowledge of families can also prevent disabled children from reaching their full potential. In extreme cases, there is anecdotal evidence of families seeking to conceal their disabled children; in many more cases, they are likely to have low expectations, and/or to be over-protective. Girls especially may risk being excluded from educational, social and leisure opportunities for these reasons. Accordıng to reports published ın July 2012, 70% of respondents to a survey do not want to have neighbours with any disability, 57.3% prefer disabled children to attend separate schools and 80% supported home-based employment for the dısabled. The reports were based on a survey carried out with the support of the Sabancı Foundation, which has conducted and sponsored much work on disability. The findings indicate that people discriminate against the disabled even while trying to imagine favourable arrangements for them.

Responding to an Özida survey in 2010 (http://www.ozida.gov.tr/ayrimciliklamucadele/eng/report_full.pdf), many disabled persons complained of discrimination, including by public officials (See also Istanbul Bilgi University Human Rights Implementation and Research Centre: Türkiye’de Engellilik Temelinde Ayrımcılığın İzlenmesi Raporu [Monitoring Report on Discrimination on the Basis of Disability in Turkey, 2010]). Although the survey did not include children, both children and young people are undoubtedly among those affected by these attitudes.

Policy development: The Ministry for the Family and Social Policies is aware of the need to address disability from a social inclusion perspective. One of its aims is to bring about attitude change through evidence-based communications activities aimed at fighting misperceptions and promoting inclusion on individuals/children with disabilities. Research is therefore envisaged on the current status of disabled children in social life including the knowledge, attitudes and practices of duty-bearers. Meanwhile, the Ministry will be holding a Disability Congress in December 2012, and various studies are to be made of disabled children in education and of links between child poverty and disability. As a result of these efforts, it is anticipated that the authorities will be able to identify barriers which families with children with disabilities experience in accessing quality services and assistance, and develop policies for overcoming them, as well as enhancing the inclusion of children with disabilities in all areas of life. The implementation of these policies within a rights-based and gender-sensitive approach will require appropriate budgeting, effective and open monitoring and strong coordination among various sectors headed by health, education and social services. Communication and social mobilization efforts will also need to be pursued further.

UNICEF Turkey Country Office, Yukarı Dikmen Mah. Alexsander Dubçek Cd. 7/106, 06450 Çankaya/Ankara. Telephone: +90 312 454 1000 Fax: +90 312 496 1461 E-mail: ankara@unicef.org