Parents Leadership in Building Inclusive Society for Children

The focus of the program is empowerment of children and parents of children with disabilities in Kyrgyzstan. By the end of 2015, ICCO has built a national coalition of parents association called Janyryk. Current project is the suggestion of FSDS for furt

  • Location
  • Start project
  • Projectstatus
    Needs funding
  • ID: NL-KVK-56484038-C_005850
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According to the context analysis of Janyryk network, two of the six most pressing problems, defined by parents, related to themselves: passiveness & segregation, and legal illiteracy. Amongst the root causes of the problem, inhering to different domains, parents indicated the following:
 fragmentation of NGOs with everyone working on the issues as working on an island
 many people do not understand the laws; they do not think they will be able to understand them, and believe even less that they can change or have an impact on the laws. They believe that others will always decide over them, which makes people passive
 parents are not organized and because of this they do not know that there are more parents struggling with the same problem. They do not learn from each other’s experiences and do not unite and organize to realize changes

The other four problems referred to poor performance and lack of accountability of duty-bearers, and to the importance of challenging stereotypes and stigma in society.
Parents, in their paths to realize rights of their children with disabilities, have faced enormous barriers and evidenced neglect or violation of the rights of their children and themselves, namely non-understanding and non-willingness of their surroundings to give them support, stigma and discrimination towards their children and themselves.

Poor conditions in state funded medical, education and other facilities; huge drain of qualified specialists, especially at local level; considerably weakened human resources capacity and professionalism urge for immediate actions towards strengthening capacity of duty-bearers so that they will be capable to fulfill their obligations on CWD’s rights realization; however, state largely fails to address these urgent needs.

Many duty bearers on the ground apply a medical model of disability which “legitimizes practices of exclusion. It advocates for children to be segregated in special classrooms or institutions... (it) perpetuates the problem of discrimination and reinforces an ability-based hierarchy where disabled children are regarded as less worthy” . Similar attitudes are prevalent in society, together with other misconceptions, prejudices and harmful practices towards CWD. Amongst the stereotypes and prejudices held by the general public, especially in rural areas, are beliefs that a child’s disability is a destined punishment for sinfulness or a consequence of the “immoral” lifestyles of their parents, mostly women. Very often women after birth of their CWD are left by their husbands. They lack support from relatives and communities.

Another ICCO funded study of 749 households in Talas identified that more than 82% of mothers were advised by medical professionals to abandon their newly born CWD to state care. The context analysis revealed that parents and other relatives reported they feel ashamed for the disabled child in their families; they keep it inside the home, ‘hiding’ it from public life instead of looking for possibilities to improve the child’s life. This attitude has had a very negative impact on the life of the children. In addition, the concealment of disabled children from public life also means that the wider society does not get many chances to get in contact with disabled children. As a consequence, people’s conservative imaginaries on disability are not challenged.
Parents Leadership in Building Inclusive Society for Children

Target group

- 1 nation-wide civic coalition (Janyryk network)
- 27 parent-led and recourse NGOs and their staff (20 parents-led and 8 recourse NGOs)
- 56 parents-led and resource NGOs’ formal leaders and their deputies (52 women, 4 men)
- 30 RGs’ members (15 in the north, and 15 in the south)
- 780 duty-bearers at regional level (360 local authorities, 210 health workers and 210 education professionals);
- general public in 7 regions, Bishkek and Osh cities


In order to ensure sustainability of the above stated intended outcomes, ICCO plans to support Janyryk network for 3 more years, by helping it in resource mobilization and fundraising to provide technical and financial support to become strong and competent network, as well as individual grass-root actors in their localities at community and district level to reach, support and engage other parents to emerge changes for CWDs in society and in duty-bearers’ practices through participation and representation.

The latter was identified by Janyryk members as the first priority to start with and a just precondition for any successes. The proposed project perfectly complements another ICCO Disability project on lobbying for state funding for community based services for CWDs, currently run by NGOs with no stable sources of income.

Sustainability will also be ensured through building synergies with HealthProm (UK) ongoing 3-year nation-wide project which aims to prevent institutionalization of CWD by providing psychosocial support to their parents, development of community-based care and rehabilitation as main alternative to institutional care and promoting early intervention for CWD

Goals overview

- Political space (Other)
- Other (Other)
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