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Effective Participation of Children with Disabilities in Decision Making Processes

Provide a description of the proposed action and its relevance, including all the information requested below, referring to the overall objective and specific objective(s), as well as to the expected results (i.e. impact, outcome(s), possible intermediary outcomes and  outputs.

Children are among the groups that have the least influence in making these decisions even though they are the longest-term affected persons. However, one who does not actively participate in life today cannot be expected to actively participate in the future. It is important for children to take a more active and democratic part of their decision-making process at every stage (family, school, social environment, legal regulations, etc.).

Child participation is a right. Any decision concerning children is a reflection of children’s own views. When this right comes to life, children become active citizens and participate in the community and more appropriate services are provided for children. Adults lead them to change their obstructive attitudes.

Child participation benefits both children and adults. It provides children with the opportunity to learn their rights and duties in a practical and appropriate way. Child participation also helps adults to respect children and treat them as citizens. Citizens’ commitment and understanding of democracy is strengthened.

Child participation and rights-based approach. are key concepts of international conventions. Rather than forcing children to live in an adult world, it is the responsibility of adults to help them participate in decision-making processes and prepare themselves for life as active members of society. However, these responsibilities are usually neglected.

Children with disabilities have fewer opportunities to participate in decision-making than their non-disabled peers.In order to ensure an active democratic participation and a more inclusive society in respect with disabled individuals, it is essential to hear the voice of children, to take their needs into consideration and to take the necessary steps to maintain “children’s active participation”.

Children have the right to participate in decisions affecting them. Children with disabilities have the same right to participate in decisions and issues affecting them as well as non-disabled children.

The importance of the participation of children with disabilities has been clearly stated both in the UN Convention on the Rights of the Child and more recently in the UN Convention on the Rights of Persons with Disabilities. However, children with disabilities have fewer opportunities to participate in decision-making than their non-disabled peers.

Besides increasing the capacity of CSO’s to ensure child participation, it is also necessary to establish cooperation among the public, the universities and the CSO’s. most importantly, supportive activities should be put in practice to increase children’s participation. The general and specific objectives of our project have been determined based on these needs.


Overall objective of project is;

Supporting the development of civil society in the field of the rights of children with disabilities by ensuring more active democratic participation of in policy and decision-making processes.



Specific objective(s) are;

– To increase the capacity of CPOs  working (CwD) about “child participation”,

– To raise awareness of (CwD) on the UN Convention on the Rights of Persons with Disabilities (CRPD), supporting learn and use their rigths.

– To increase the capacity of (CwD) to participate in civil society through peer education and play

– To raise awareness of public institutions, universities and CSOs on the participation of (CwD) and to develop a cooperation mechanism



Key Stakeholders

Lead Applicant: Türkiye Spina Bifida Derneği (TSBD)

Co-Applicant: Disleksi Öğrenme Güçlüğü Derneği, (DOGD)

The Associate: Hacettepe Üniversitesi Çocuk Hakları Uygulama ve Araştırma Merkezi


Spina Bifida Association Of Turkey (

Spina Bifida means open or split spine. It is one of the most frequent birth anomalies in our country (1-3 live births per 1000) and in the world, 1 in every 1000 live births. It causes permanent serious disabilities such as paralysis on bladder and intestinal dysfunction.

Turkish Spina Bifida Association was founded in Izmir in 1997 by people with spina bifida, relatives and specialists. It has branches in Istanbul, Ankara, Bursa, and also has agencies in Trabzon, Edirne and Manisa. It is the only NGO with approximately 1000 members countrywide. In the year 2014, the name of the association was officially registered as “Turkish Spina Bifida Association” with cabinet decree.

Goals of Turkish Spina Bifida Association:

  • Raising the standards on diagnosis and treatment of Spina Bifida to intentional levels,
  • Studies towards decreasing the birth ratio of babies with Spina Bifida (mandatory Folic Acid supplementation to flour, etc.),
  • Studies on protection and development of the rights of individuals with Spina Bifida
  • Informing the society on the issue of Spina Bifida,
  • Developing solutions to medical, educational and social problems of the individuals with Spina Bifida,
  • Studies focusing on raising the life quality of individuals with Spina Bifida,
  • Building solidarity and collaboration among the individuals with Spina Bifida, their families, specialists and volunteers,
  • Uniting and developing the knowledge and experience of the specialists on Spina Bifida.


Turkish Spina Bifida Association is a member of the International Federation of Spina Bifida and Hydrocephalus since the year 2000. Turkish Spina Bifida Association is Board Member of International Federation since 2013.

Our association has organized numerous trainings, seminars, social and scientific activities; and run conjoined projects with several public, private, civil institutions and establishments on its objectives. Some of them;

The project of ‘Neural Tube Defects for Healthy Generations Safe Maternity’; contract code Deltur/2005/113-531; came true with the help of European Union grants in the scope of Reproductive Health Program by Ministry of Health Turkish Republic. The project took place in Narlıdere district of Izmir. 5000 women participants were educated by medical personnel on planned pregnancy and the importance of folic acid intake. The results of the project were published in STED magazine emitted by Turkish Medical Association for the enduring education of primary health care medics (Aug 2007, Cilt:16, Sayı: 8). It was also presented in the Micro Nutritional Inadequacy National Symposium organized by Health Ministry of T.R. in 2007.

In the year 2009, the project ‘Integration of Young People with a Disability with Social Life’ (was conducted with the grant aid from Izmir Development Agency (IZKA). The purpose of the project is to activate the legal request mechanism through raising disabled youngsters’ consciousness on their rights and motivating them into reclaiming their rights, and also educating the disability associations about advocacy based on rights. It is also to raise the awareness and sensitivity of public employees who hold positions in the institutions that are supposed to make developments and changes towards disability.

Regular solidarity meetings have been ongoing since 1998 in all the branches of the association with the participation of professional doctors and individuals aiming to inform and educate both the patient and his/her families on their medical and social rights. Also, since 2000, with coordination of its branches and agencies, the association is holding a National Spina Bifida Congress. Sixteenth National Congress will be held in Özdere/İZMİR in September 2019.

In 2014, Turkish Association hosted the Twenty Fifth International Spina Bifida and Hydrocephalus Congress in Izmir with participation of thirty-one nations.

Congress holds social programs and scientific sessions oriented for people with Spina Bifida, their families, volunteers and professionals; therefore, the congress has high importance on determination of common issues and problems. In every congress, special subjects and sessions takes place for members of the community.