Parents Lead Change for Children with Disabilities in Tajikistan
By Jo Baker
There is much talk nowadays about whether development work makes a real sustainable difference and indeed if it is useful at all. But my experience in Tajikistan is an example of how the right kind of development support and the empowerment of local communities can, and does, change lives.
In 2009 I arrived in Tajikistan to work with Voluntary Services Overseas (VSO) by supporting a small parent led organization working with children with disabilities—one of the most disadvantaged and marginalized groups in Tajik society. Often excluded from school, hidden away at home or in institutions and dismissed by society as worthless, these children and their families face a life of challenges and must fight for their rights every step of the way.
In 2009 the picture was dismal. There was one Association of Parents of Disabled Children (APDC) operating in Dushanbe, the capital of Tajikistan, and a couple of fledgling groups in other regions. With no premises or office base, they were operating in the corridors of the local health clinic or in any available space, on a minimal budget with no staff or equipment.
The Association has worked hard over the past three years to expand the services they offer families. They have reached out to colleagues and fledgling parent groups across Tajikistan and raised awareness about the challenges of living with disability among the general public, government agencies, and donors. Using the skills that parents bring, the Association has become an umbrella for parent groups advocating for the rights of children with disabilities, developing occupational therapy and other services, and supporting inclusive education in schools and kindergartens in their communities.
Fast forward to 2012 and there are 14 Parent Associations operating across Tajikistan. Every region of the country is represented. Every organization is actively delivering services to children with disabilities and their families. Together they have become an informal network, coming together for training and to learn from one another.
The Association of Parents of Disabled Children in Dushanbe now has premises and 12 paid staff. They work with an average of 50 families per month. The other associations are growing fast, following the example set by the APDC Dushanbe. Most have paid staff and an office base. All are supporting families in their communities. They provide information and advice, support for parents, and programs to prepare children with disabilities for starting school. Many children with disabilities have benefitted from their work. Some are in school. Others have access to health services or benefits. Their lives are better thanks to the work of these parent led organizations.
November 2012 saw these parent led organizations take their next major step. The National Coalition of Parent Organizations for Disabled Children in the Republic of Tajikistan was set up—its mission, the “cooperation of Parents Organizations of the Republic of Tajikistan to protect the rights and interests of disabled children and their families in order to create an inclusive society.”
The Coalition will work together to lobby local and national government through a coordinated approach in every region of the country. The Coalition is planning their first campaign early in 2013 to raise awareness around the challenges faced by children with disabilities and their families. The campaign will be national. Together they will be a strong voice advocating for change for children with disabilities and their families in Tajikistan.
Jo Baker is a consultant for the Open Society Education Support Program.